Gordon Brown: We must resist the call to legalise assisted suicide

Death as an option and an entitlement would fundamentally change the way we think about mortality, warns Gordon Brown.

 Many times in the past 80 years, Parliament has considered – and rejected – the legalisation of assisted suicide. If, in the wake of revived debate on these matters, a new proposal were to come forward, I do not believe the outcome would be any different.

Cases dominating the public arena make for harrowing reading and the first and most obvious response is to say that something must be done. But when these complex, individual and distressing cases are considered in detail, a solution that at first might seem sensible – the right to die in a manner and at a time of one's choosing – swiftly becomes less straightforward and more worrying.

 

I believe that people are drawn to support the right to assisted suicide because of fears about how they will be cared for when they are dying. They ask themselves: Will I be left alone? Will I suffer pain? Will I lose my dignity and my individuality? Will there be no one there to care for me? Will I be kept alive and subjected to tests and treatments that will do little good and serve only to extend the process of dying?

I believe that we should look more closely at such fears and what has been done to address them.

One of the greatest developments in medicine in recent times has been the rise of the speciality of palliative care – something I learnt a lot about when researching an essay on Dame Cicely Saunders, who pioneered hospice care in the last century.

Appalled by the fate of "incurables", and their abandonment by medicine, she showed through ground-breaking research and relentless campaigning how the last months of someone's life could be pain-free, dignified and worth living. Palliative care, in great part thanks to her efforts, has now become part of mainstream medicine.

I was fascinated to discover that Lord Raglan, who had tried in vain to promote a Euthanasia Bill via the House of Lords in 1969, later publicly debated the issue with Dame Cicely. After he had heard her talk, he graciously conceded that, if he could be sure he could be looked after by her and her team, he would cheerfully abandon all his efforts to legalise euthanasia.

We still have to do more to ensure that more people can have such care in their own homes, but I believe that a duty of government is to minimise the fear of dying badly.

Great progress has also been made to reduce the fear of over-treatment, when interventions might be uncomfortable and unhelpful, and only serve to prolong life without maintaining quality. People can now make advance directives that give them the control and the power to determine, when they are well and of sound mind, their treatment in changed circumstances.

Doctors are also more attuned to carrying out the wise advice of a senior medic to his junior:

"Heal the sick, comfort the dying – and don't get them mixed up."

But these are all difficult issues and we should remember that at the heart of each case is a family in tortured circumstances, which has to make the most agonising of choices.

This complexity has been recognised. Keir Starmer, the Director of Public Prosecutions, will tomorrow be publishing his final policy clarifying the factors to be considered in prosecution decisions on cases of encouraging or assisting suicide. It is for him to make clear his approach and the Government has not made any representation to him.

Following this clarification, and because of some important developments in care over recent decades, the case for a change in the law is now weaker.

The law – together with the values and standards of our caring professions – supports good care, including palliative care for the most difficult of conditions; and also protects the most vulnerable in our society. For let us be clear: death as an option and an entitlement, via whatever bureaucratic processes a change in the law might devise, would fundamentally change the way we think about mortality.

The risk of pressures – however subtle – on the frail and the vulnerable, who may feel their existences burdensome to others, cannot ever be entirely excluded. And the inevitable erosion of trust in the caring professions – if they were in a position to end life – would be to lose something very precious. For when I think of the kind of care Sarah and I saw in our local hospice, where we worked as volunteers, I know in my heart that there is such a thing as a good death.

And I believe it is our duty as a society to provide the skilled and loving care that makes it possible; and to use the laws we have well, rather than rush to change them.

The Telegraph

Rheumatoid arthritis sufferers 'need faster treatment'

People suffering from Rheumatoid arthritis (RA) could benefit from better trained doctors and faster treatment, a health industry member has said.

Federico Moscogiuri, head of policy and campaigns at Arthritis Care, has called for GPs to be "adequately equipped to identify the symptoms of RA and refer patients promptly for specialist treatment".

However, a National Audit Office report in 2009 found that only 66 per cent of acute trusts were satisfied that GPs were referring RA patients to them quickly enough.

Mr Moscogiuri's comments follow the release of a paper from the Commons public accounts committee which found that an estimated 580,000 people in England are suffering from the disease.

The report also revealed that by beginning to treat the illness within three months of diagnosis, RA could be prevented from worsening.

Despite this, the typical time between first symptoms and the beginning of treatment for an RA patient is nine months.

Mr Moscogiuri echoed the report, saying: "Early diagnosis and referral is key for treating and managing RA, which is why greater awareness of the condition and better GP training are so important."

Private Healthcare UK

Carers UK calls for new Social Contract

Charity urges all political parties to take action before 'tipping point for care' is reached


On the day of the care conference called by Secretary of State for Health, Andy Burnham MP, to try to find political consensus on the reform of social care, Carers UK is calling upon government, employers, public services, communities and families to sign up to a new social contract before a tipping point for care is reached in 2017 that risks plunging families and the UK economy into disaster.


Demographic change is one of the greatest challenges facing our society and our economy.   More people are living longer and living longer with disability and greater numbers are now entering retirement than are entering the labour market.  Unless we take action now, the care needed by older people is likely to outstrip what families currently provide by 20172 - this is the tipping point for care.  Unless more services are provided in a way that really helps families, more people will be unable to work.  New research from Birmingham University sets out some of these risks - families will be less likely to be in work and will miss out on an estimated £750 million to £1.5 billion in earnings each year if there is not sufficient investment in care. 


Around one million people have given up work to care (Ipsos MORI) - one in six people with caring responsibilities. Those providing significant amounts of care are twice as likely to suffer ill-health and those providing care over long periods of time are far more likely to be in receipt of means-tested benefits.   Every day, over 6,000 people take on a caring role for a family member or friend, unpaid, and there are a staggering six million people providing this care throughout the UK.

Imelda  Redmond, Chief Executive of Carers UK, said, "It is time that we think completely differently about how care is provided and about supporting families who do decide to provide care, unpaid.   With constraint on public finances, it is critical that we all work together to ensure that families and individuals are given the support they need, so that they can meet the challenges of managing chronic illness and disability."


She added, "Carers are looking to all political parties to provide a strong lead - but every other public service, our communities and employers and even our families have a role to play. Our social contract sets out this vision."


The social contract recommends: 

· A nationally determined entitlement to care and support which recognises the contributions of families and carers

· A funding system for care which is fair and transparent.

· Flexibility and support from employers to provide workplaces that meet both business needs and the needs of families and individuals to juggle work and care.

· A tax and benefits system which prevents financial hardship, recognises families' contribution to care and gives carers the flexibility and security to juggle care and working lives.

· Communities which better understand and respond to the impacts of disability, chronic illness, age and caring on people's lives, supported by public services - health, care, transport, housing, education, leisure - that enhance family life.


Carers UK will be publishing its policy manifesto shortly giving political parties a road map for how a new Government could deliver on this social contract.   

Caring Business

Government announces measures on asbestos-related illness

The Ministry of Justice today announced a range of measures to support people who have been exposed to asbestos.
This follows a government consultation on how best to respond to a Law Lords’ ruling of 17 October 2007, which decided pleural plaques – an asbestos-related condition – were not compensatable damage.
The measures announced today include:

• An extra-statutory scheme of fixed payments of £5,000 for individuals who had begun, but not resolved, a legal claim for compensation for pleural plaques at the time of a House of Lords ruling in October 2007, which ended the right to receive compensation.
• The creation of an Employers' Liability Tracing Office to help people who develop an asbestos-related disease to trace the relevant insurer and obtain full compensation.
• A Department of Work and Pensions consultation, currently underway, on the creation of an Employers’ Liability Insurance Bureau, which will act as a fund of last resort for sufferers of asbestos-related disease who cannot trace the insurance records needed to gain compensation.
• Increased upfront payments for mesothelioma sufferers and their dependents.
• A commitment to expand research in this area, including considering how best to establish a world-leading network of medical practitioners to research asbestos related disease, with government support for increased investment alongside £3 million of funding from the insurance industry.
• A working group of claimant solicitors, trade unions, insurers, the judiciary and civil servants to examine litigation practices and procedures for compensation claims relating to mesothelioma, and to identify options for streamlining them in order to reduce the time taken to conclude cases.
• Consideration of changes to the law to clarify the limitation period to bring a claim for mesothelioma, and resolve differences in claims settled before or after death.
• The Third Parties (Rights against Insurers) Bill, currently before Parliament, which aims to simplify the process of bringing claims against the insurers of companies which no longer exist.

The Ministry of Justice has carefully considered the question of whether to restore the right to claim compensation for pleural plaques, since the Law Lords’ ruling in October 2007.
On the basis of medical evidence received during the course of this review, including reports from the Chief Medical Officer for England and the Industrial Injuries Advisory Council, we are unable to conclude that the Law Lords’ decision should be overturned at this time. The medical evidence is clear that while pleural plaques are a marker of exposure to asbestos, they are generally symptomless, are not harmful and do not become harmful. Any increased risk of a person with pleural plaques developing an asbestos-related disease arises because of that person’s exposure to asbestos rather than because of the plaques themselves. However, if new medical or other significant evidence were to emerge, the government would obviously reassess the situation.
We do however acknowledge that a particular grievance is felt by individuals who had already begun a legal claim for compensation for pleural plaques at the time of the House of Lords’ decision in October 2007, who had an understandable expectation that their claim would result in compensation. The government has therefore decided to make extra-statutory payments of £5,000 to individuals in this limited category.
Secretary of State Jack Straw said:
‘We are firmly committed to supporting people with asbestos-related diseases and intend to build on and extend the measures which we have already introduced in this area.
‘To that end the government will work to increase medical research into asbestos-related diseases, speed up and simplify claims procedures for mesothelioma sufferers, increase interim payments for mesothelioma sufferers and their dependents, and improve the tracing of past insurance policies needed to make claims. We have already published a consultation on establishing an Employers’ Liability Insurance Bureau which would serve as a fund of last resort so that all who develop mesothelioma receive full compensation.
‘In addition, we will make extra-statutory payments to those who had begun but not resolved a legal claim for compensation for pleural plaques prior to the House of Lords’ decision in 2007.’

Notes for editors

1. The Justice Secretary’s written ministerial statement
2. Pleural plaques are small localised areas of fibrosis found within the pleura of the lung caused by asbestos exposure. They do not usually cause significant symptoms (if any) and do not impair lung function. Pleural plaques are in themselves benign but are a marker of exposure to asbestos. On the basis of certain High Court decisions in the 1980s, it was possible for people to be awarded damages for negligent exposure to asbestos which had led to the presence of pleural plaques. However, in January 2006 the Court of Appeal held in the case of Rothwell v Chemical & Insulating Co Ltd (and conjoined cases) that pleural plaques were not compensatable. In a unanimous decision on 17 October 2007 the House of Lords upheld that decision.
3. Compensation is already available for a range of asbestos-related diseases such as mesothelioma, asbestosis, pneumoconiosis and asbestos related lung cancer, and the House of Lords judgment confirms that if the claimants did develop any recognised asbestos related disease in future they would then have a claim in respect of that disease. However, following the Law Lords' decision compensation is no longer available for pleural plaques.
4. Evidence from the reviews from the Industrial Injuries Advisory Council and the Chief Medical Officer has demonstrated that:

• Although a diagnosis of pleural plaques confirms that a person has been exposed to asbestos, pleural plaques do not in themselves produce any significant physiological change or loss of lung function, and only very rarely give rise to physical symptoms.
• They do not become malignant or lead to mesothelioma or other asbestos-related diseases.
• Any increased risk of a person with pleural plaques developing an asbestos-related disease arises because of that person’s exposure to asbestos rather than because of the plaques themselves.

The full reports are available on the Parliament website.
5. Information on the pleural plaques former claimants payments scheme.
6. The government already provides the following help to all sufferers of mesothelioma:

• You may be entitled to a lump sum payment from the government under the Pneumoconiosis etc. (Workers’ Compensation) Act 1979.
• If you develop mesothelioma through coming into contact with asbestos as a result of paid employment, you may be entitled to Industrial Injuries Disablement Benefit.
• If you were exposed to asbestos while you were serving in the armed forces rather than in other employment, you can make a claim for a war disablement pension from the Veterans Agency.
• If you need help with personal care or have difficulty getting around because of your illness, you may be entitled to claim Disability Living Allowance if you are under the age of 65 when you claim.
• If you are over 65 and need help with personal care because of your illness, you can claim Attendance Allowance.
• If someone is in receipt of Attendance Allowance or certain rates of Disability Living Allowance and has someone helping to look after them for 35 hours or more a week, then that person may be entitled to claim Carer’s Allowance.
• If your mesothelioma is likely to have been caused by you being exposed to asbestos at work, you may be able to claim compensation from your employer by suing them for negligence.

7. For further information on what financial help there is for those with mesothelioma, see Help and advice for people
with mesothelioma [PDF 356kb, 8 pages], published on the Department for Work and Pensions website. If you have any queries on this please call the Department for Work and Pensions press office on: 0203 267 5113.
8. Consultation on the Employment Liability Tracing Bureau
9. For further information, please call the Ministry of Justice Press Office on 020 3334 3536.

Ministry of Justice

British high street's first disabled model is coming to a shop window near you

Shannon Murray, a model and actress, recently finished a photo shoot for Debenhams which will be displayed in the retailer's flagship Oxford Street store in the next week, The Independent has learned.

The announcement will be welcome news to campaigners who have long argued that the fashion industry and high street retailers too readily forgo variety in favour of pinning their clothes on skinny models who bear little resemblance to the average British woman.

A spokesperson for Debenhams refused to confirm any details yesterday, but sources within the fashion industry said Murray's photographs were taken last week and would feature clothing from the chain's relaunched Principles range.

"The shoot has taken place and the photos are absolutely fabulous," said one source. "I really believe this is a genuine step towards having a much greater variety of faces fronting campaigns on the high street."

The campaign is designed in conjunction with the latest series of Channel 4's How to Look Good Naked, the award-winning fashion show hosted by Gok Wan which encourages women of all shapes and sizes to strip off and love their bodies. Wan's latest series, which began airing last month, is celebrating disabled women and later episodes will follow Murray's journey.

The Debenhams spokesperson was willing to confirm that the chain had been working with producers of How to Look Good Naked and had recently been out filming with them.

In the comparatively small world of disabled modelling Murray, 32, is regarded as a pioneer. She was confined to a wheelchair at the age of 14 after she broke her neck during a family holiday to Lanzarote. But she remained determined to make it as a model.

In 1994 she won the first modelling competition for disabled women. It was organised by Louise Dyson, an equally unconventional fashionista who runs VisABLEModels, one of the few agencies that specialises in finding work for disabled models. She has since become one of VisABLE's most recognisable talents with a string of modelling and television shows under her belt as well as a law degree.

VisABLE yesterday said neither it nor Murray was permitted to talk about the upcoming Debenhams campaign. But on her blog the 32-year-old model revealed how nervous she had become at the prospect of fronting a major high street brand. "I've been modelling for over 14 years but this was different," she wrote on the day of the shoot.

"It is a first and as I was getting ready in hair and make-up, the potential of this shoot suddenly struck me ? another small step towards inclusion and representation. I hope the images challenge a few misconceptions about disability; it's been a long time coming."

Unlike other high street stores, Debenhams is showing an increasing willingness to inject some variety into the people modelling its clothes, particularly its new Principles range, which it bought the rights to when the firm went into administration last year.

Last week the clothing chain announced that it would trial size-16 mannequins in some of its stores. The majority of women in Britain are size 14 or 16 but almost all store mannequins are size 10 or below. Debenhams itself sells 42 per cent of its clothes at sizes 14 and 16. Models on the catwalk, meanwhile, constitute an even smaller demographic and are usually between sizes 6 and zero.

Disability campaigners yesterday welcomed the new approach but warned that stores should continue to vary their mannequins and avoid one-off publicity gimmicks.

"As long as the campaign is more than just a brief moment of tokenism then I think it should be welcomed," said Clair Lewis, from the Direct Action Network, which has picketed high street stores that refuse to install access for disabled people. "Britain is a varied placed filled with women of different sizes and ethnic backgrounds. The models and high street windows should reflect that variety but all too often they don't."

Disability on television

Kelly Marie Stewart
Currently on maternity leave, Stewart has made waves as the first permanent member of Hollyoaks to have a disability. She, and her character Hayley, suffer from Guillain-Barré syndrome.

Cherylee Houston
Coronation Street was the first British soap to regularly feature a disabled character with deaf actress Ali Briggs. Now it has Houston who, in April, will play a fiery love interest called Izzy.

Cerrie Burnell
Her arrival as a CBeebies presenter provoked a row when parents complained her appearance might scare children. She was born with part of an arm missing. She dismissed them as "small-minded".

Peter White
The BBC's disability affairs correspondent was the first totally blind person to produce reports for television news. He first broadcast for the BBC in 1971 and is the presenter of two Radio 4 shows.

The Independent

Disabled Parking Barriers

Yesterday I visited Woking.  I suspect I wont be going there again for a while.  Below is an email (personal details removed) I have just sent off to Woking Borough Council after I received a parking ticket in the Peacocks Multi-Storey.

It makes me wonder how many other Councils make parking difficult for Blue Badge holders?

How good is your local parking?  Email me your stories.  info@disabiitydirect.org

Dear Sirs,

 

I'm writing to you with reference to the parking ticket I received yesterday while parking on level 2 of the Peacocks Centre in Woking, as it has left me somewhat bemused.

 

I have been a wheelchair user for thirty years and for the last twenty-five because of Cerebral Palsy I have not been able to walk at all.  Despite this I still do my best to lead an active and productive life. I visited my sister yesterday who lives in Woking and we thought it would be nice to do some shopping in the Peacocks. My sister doesn't drive and its been well over a year since I have tried to park in the multi-storey car park.

 

So I was quite surprised to find that in order to get free parking I would need to apply for an exemption.  Never mind, it only was one trip and was too late to do anything as I was already in a queue for the barrier, so I was prepared to pay, which I did £3.90 on the way out.

 

Regardless of whether I paid or not, I still require a large parking bay to enable me clear access to the side of the car for my wheelchair - so I used a disabled parking bay on level 2.  On a row of, I think 6, specially marked bays.Mine was the only vehicle in the row at the time of parking and indeed was still the only vehicle when I returned.

 

I will say the casual manner in which I threw the badge and clock on to my dashboard certainly did obscure some of the details of the badge,  but how I display the badge makes no difference to my disability I still need the wheelchair!

 

Of greater concern to me is the new barrier system that is now in place at the Peacocks.  As its very fortunate that my sister accompanied me otherwise I would of been stuck. 

 

I drive a new Ford Focus which I have recently got through the Motability scheme (incidentally even the tax disc says 'disabled' on it).  The Focus is not a big car like a MPV, yet the button to obtain a ticket to park and the slot on the outgoing barrier where both two low for me to reach through my window.  If it wasn't for my sister I wouldn't of been able to get through the barriers as she had to get out of the car, run round, and remove the ticket and insert the damn thing in the slot on the way out.

 

I dread to think what an unaccompanied disabled driver is supposed to do?  There isn't enough space or indeed time to get a wheelchair out ... get in it ... put your ticket in the machine ... get back in the car ... put a wheelchair back in ....

 

Added to that, on the payment machines there is a notice that once paid for you only have five minutes to exit the car park.  Even with help it takes more time than that to get both myself and my wheelchair in the car.  Fortunately I wasn't alone and my sister paid after she made sure I was in the car and ready to go.

 

As  former vice-Chairman of a disability advice charity and an active campaigner on disability issues (see my site, www.disabilitydirect.org), I'm really concerned that the Peacock's car park is now effectively off limits to the occasional disabled visitor like myself.  Which is a shame given that the Peacocks and Woking town are so accessible to those with a mobility impairment.  I  suppose if I were a more frequent visitor I could apply for a parking permit, but to be honest I don't see the point as there is still the problem of accessing the barrier controls.

 

I did remark to my sister how it seemed that disabled badge holders were apparently queuing, waiting in their cars for a parking space out side BHS and she replied that it was a common sight. Now I understand why. Have Woking Borough Council done any follow up on how the new barriers have affected provision of disabled parking in the town?  If they have it would be interesting to see it.  The DDA talks of  'reasonable adjustment' yet it seems that the new barriers are quite the opposite.

 

I begrudgingly understand if you do not decide cancel the parking ticket, as I have already openly admitted that my badge wasn't displayed correctly.  But it would make for a very expensive day out (£35 + £3.90). But at least it has given me the motivation to share my concerns and provided some great content for my blog and website.

 

I would appreciate it you could respond and confirm receipt of this message at the earliest opportunity, my contact details are below, as obviously the penalty rises to £70 after 14 days.

 

Many thanks

 

 

Editor, disabilitydirect.org

 

Croydon shoppers 'face mobility scooter price hike'

Disabled people in Croydon who rely on the local mobility scooter hire scheme to do their shopping may have to pay triple the current amount to continue using the service, according to the Croydon Guardian.

The Shopmobility scheme in the town's Whitgift shopping centre allows elderly and disabled shoppers to park and rent the vehicles but the local council is set to raise the registration fee for the service by 300 per cent from £10 to £30.

As part of the council's plans, registered users who pay £1.50 for a day's hire will now have to fork out £4.30 and non-registered users will see an increase from £3 to £8.50, according to the newspaper.

Leader of the Croydon Labour group councillor Tony Newman said: "This is an absolute disgrace. It is a tax on some of the most vulnerable people in the borough, dressed up as something else. It is a Tory council con."

In related news, shoppers in the Welsh town of Rhyl recently saw their local Shopmobility scheme closed down after failure to repay outstanding debts. 

Help My Mobility

Travel industry 'failing to cater for disabled'

Britain's leading travel companies are failing to serve the needs of disabled travellers, new research has found.

The study, carried out by Tourism for All, a British-based charity that specialises in travel for the disabled, found that 85 per cent of respondents did not believe travel agents understand the needs of disabled travellers, and 78 per cent did not feel they were catered for by high street agents. The survey also found that 35 per cent would not consider booking with a mainstream travel agent.

There are approximately 10 million adults and 750,000 children in the UK who suffer from some form of disability. It is estimated that a quarter of these regularly travel abroad.

Brian Seaman, head of consultancy at Tourism for All, said the travel industry needs to do more to understand the needs of disabled travellers.

"We have conducted independent research in the past by sending disabled travellers to the high street to find a disabled-friendly holiday to Majorca," he said. "In every case, not one travel agent was able to offer a product that might have resulted in a booking. The agents had great difficulty in finding suitable accommodation and when it came to visiting the accommodation on the island that they were able to find, they turned out not to be as accessible for disabled people as the agents had suggested."

Keith Richards, head of professional development at Abta, the travel association, admitted that the level of awareness of disability issues within its membership was not as high as it should be, but said there had been a big improvement in recent years.

"In June we will be launching our e-learning tool on accessible travel for all our members. We're developing this jointly with the Equality and Human Rights Commission to tackle the issues raised here," he said. "The services are mostly provided overseas where there is rarely any legal framework to provide access to goods and services generally, let alone hotel or tourism services. It is left to British tour operators and agents to try to find out how accessible a hotel is."

Jane Witherington, commercial and market development manager at the Co-operative Travel, which commissioned the Tourism for All research, has promised to improve its service to disabled travellers.

"We have launched a new tailored service aimed specifically at disabled travellers," she said, "and trained staff from 40 branches nationwide to ensure that they are up to speed with all aspects of holidays for people who require specialist travel."

This week Expedia, the online travel agent, launched new search tools designed to help disabled travellers find accessible accommodation. The move follows a court case in the US last year that resulted in Expedia being instructed to add content and search features to its websites that would allow people with disabilities to reserve rooms. The service is currently only available on the US website.

Leonard Cheshire, a British charity that supports disabled people, has given warning that many airports still fail to meet the needs of disabled passengers, despite EU laws introduced in 2008 that make it the responsibility of airports to provide assistance to disabled travellers. The Civil Aviation Authority is close to completing its own report on how these laws have been implemented.

The Telegraph

Personal Budgets - which local authorities are ready?

With the biggest ever shake up in social care funding just one year away local authorities are failing to provide vital information for disabled people and risk undermining moves to give greater choice and independence for up to 1.75million people across the UK.
This conclusion is the result of a systematic review by Livability, the national disability charity into the performance of local authorities across England. The review, which included benchmarking best and worst performers, surveys and a mystery shopper exercise reveals:

*Almost half (45%)  of local authority websites had no information at all on Personal Budgets

*Almost half of telephone enquiries about Personal Budgets were misdirected and almost a quarter of local authorities were unable to provide any information at all

*Only 3% of local authorities were able to recommend additional sources of information on Personal Budgets to the mystery shopper
Livability's mystery shopper contacted 103 local authorities (including all London authorities). The City of London and Portsmouth City Council were the best performers, being the only two to score a perfect 10 for the information provided.
More evidence shows that local authorities are failing to engage and consult with the people who could benefit from the new funding systems (Personal budgets) being introduced in 2011. An nfp Synergy survey commissioned by the charity of over 500 disabled young adults also showed a disturbing lack of awareness of these new funding systems, which have the potential to transform their lives. Of those surveyed:
* 9 out of 10 (87%) of the people surveyed had never heard of Personal Budgets

* Over half (54%) of the people surveyed did not even know the name of the local authority that provide their services.
Livability is warning that these findings will affect an estimated 1.75 million disabled people in England and around 25,000 providers who deliver services which cost the public purse £17.5 billion.*
Where pilot schemes have been in operation (for example, in Essex and Coventry) the funding system has led to disabled people choosing to make substantial changes to their housing and support services. Replicated on a wider scale this will threaten the viability of current services and their staff as people choose to opt for alternatives.
Chief executive of Livability Mary Bishop said:
"The results of our research are extremely worrying. Personal Budgets have the potential to transform the lives of disabled people by giving them choice and control and yet awareness of them is woefully inadequate. With just over a year to go until they are rolled out across England, it is clear that central and local government are ill prepared. We would like to help and engage with them without delay in developing new services needed by disabled people."
Mark Harper, MP Shadow Minister for Disabled People says:
"It is clear from the reports findings that there is still a great deal more to do to ensure that disabled people up and down the country can take advantage of Personal Budgets. All the evidence says that disabled people with a Personal Budget have more control of their lives and better health outcomes.
There is clearly a role here for Central Government to show more leadership and to impress upon Local Authorities the importance of making these opportunities available for disabled people."
Baroness Howarth, is today taking the charitys concerns to Phil Hope, MP, the Minister for Care Services and the charity will be delivering the damning findings and recommendations for urgent action to every MP and local authority in England. To ensure the funding scheme is kept on track Livability urges:
* Central Government run a nationally branded campaign to raise awareness of Personal Budgets among disabled people;

* Local authorities and PCTs consult and engage with disabled people in their area to find out what they want and the help they will need to make it happen
* Local authorities use that information to map out the services that will be needed by local disabled people when Personal Budgets are rolled out nationally in 2011;
* Local Authorities and PCTs work closely with providers to ensure that the services needed are available so that disabled people have genuine choice.

For more information please contact:
 Alison Tebbutt, Media and PR Manager at Livability, on tel: 0207 452 2082 mobile: 07590 409 880 or email atebbutt@livability.org.uk
Rachael Christophides, Head of Campaigns and Media Relations, on tel: 020 7452 2126 mobile: 0796 8194385 or email rchristophides@livability.org.uk

Livability

DISABILITY CHARITY WELCOMES FLEXIBLE WORKING REPORT

A disability organisation today (Thursday, 18th) welcomed a report highlighting the benefits of flexible working.

The Employers' Forum on Disability said the report, published by the Cochrane Library on Wednesday, showed that flexible working benefited everyone, not just disabled people who may require their employers to make adjustments for them under the Disability Discrimination Act.

The report found that mental health, blood pressure and sleep patterns were better among people who could determine their own working hours.

The Cochrane Systematic Review included 10 studies, involving a total of 16,603 people, focused on various different forms of flexible working.

In one study, police officers who were able to change their starting times at work showed significant improvements in psychological wellbeing compared to police officers who started work at a fixed hour.

Susan Scott-Parker, chief executive of Employers' Forum on Disability, said: "This report helps show that flexible working benefits everyone, not just disabled employees who may need it as a reasonable adjustment under the Disability Discrimination Act.

"Most reasonable adjustments are cost-free, and making flexible working the norm is one way in which employers can benefit from getting it right on disability.

"Organisations like this are better employers for everyone, and make significant cost savings and productivity gains through developing more efficient recruitment, employment and customer service processes."

Co-author of the report Kerry Joyce, who is based at the Wolfson Research Institute, Durham University, added: "We need to know more about how the health effects of flexible working are experienced by different types of workers, for instance, comparing women to men, old to young and skilled to unskilled.

"This is important as some forms of flexible working might only be available to employees with higher status occupations and this may serve to increase existing differences in health between social groups."

The Employers' Forum on Disability is an employers' organisation focused on disability as it affects employers and service providers. It works closely with the Government and other organisations, sharing best practice to make it easier to employ disabled people and serve disabled customers. For more information visit www.efd.org.uk.

The Cochrane Library is a collection of databases of independent evidence to inform healthcare decision-making. Cochrane reviews aims to represent the highest level of evidence on which to base clinical treatment decisions. For further details visit www.cochrane.co.uk.

Community Newswire

A great advance stopped in its tracks

By Yannis Vardakastanis and Heidi Hautala

 

Millions of Europeans may have to wait years before they benefit from the EU's ratification of the UN's convention on the rights of people with disabilities. 

 

In November, for the first time in its history, the EU as a body, not just its member states, ratified an international human-rights treaty – a treaty that affects around 65 million people in Europe and 650 million worldwide. 

So the signature that the EU attached to the United Nations Convention on the Rights of Persons with Disabilities was both historic and of huge practical importance. 

Indeed, for the disability community in Europe, its significance is hard to overestimate: never before has the EU made such a public, long-term commitment to issues such as equality and non-discrimination of disabled people in all areas of life, recognised their right to live independently in the community and accepted an obligation to take disability into account in all international co-operation work. 

But whether this commitment has a real impact depends on the EU's member states. The Council of the European Union ratified the convention on 26 November and the convention, which was adopted in 2007, will become binding across the EU when the ratification instrument is formally deposited with the UN – but the Council says it can deposit it only when each member state has ratified the treaty. This is a political decision, rather than a legal requirement: the European Community has previously ratified international agreements without waiting for all of its member states to do so. 

It is a decision that is proving far-reaching. Of the 79 countries that have ratified the convention to date, only 13 are EU states (Austria, Belgium, the Czech Republic, Denmark, France, Germany, Hungary, Italy, Portugal, Slovenia, Spain, Sweden and the UK). The talk among officials is that it could take years for the other 14 to put their stamp on the treaty. 

This effectively means that disabled people in the 13 member states that have already completed ratification can enjoy only some of the rights granted them under the convention: a disabled Italian woman can complain about violation of her rights if the law or policy in question is based on national law (which must be in accordance with the convention), but not if it is based on EU law (which does not yet have to respect it). 

This leaves disabled people across the EU without the benefits of the convention. To date, the disabled have systematically faced barriers, exclusion and discrimination in their daily lives. With the convention in force, EU member states would be obliged to remove barriers, to curb discrimination and to adopt inclusive policies in areas such as transport, cohesion funds and the free movement of goods, persons and services, to name just a few. States and the EU as a body would be obliged to actively involve organisations representing disabled people in the development of legislation and policies, people with disability would be guaranteed a special role in implementation and the EU would submit regular progress reports to the UN Committee on the Rights of Persons with Disabilities. 

As these examples suggest, the convention marks a radical change in thinking about disabilities. In the 2000s, there was a realisation – within the EU, and around the world – that that the only sustainable approach to disability was one based on human rights. The old approach – to rely on charity – had limited disabled people's access to ordinary life and limited perceptions of them. 

The political reluctance of the EU to proceed with ratification without waiting for the 14 states that have yet to ratify the convention domestically keeps the disabled in their old position, as recipients of charity. It places traditional champions of human rights – EU states – behind many other states. It leaves 65 million Europeans without the respect, defence and promotion of their rights that the EU has a whole says they are entitled to. And, it makes the millions of disabled Europeans who already know about the convention doubtful about their government's good will and commitment to them. 

Yannis Vardakastanis is president of the European Disability Forum. Heidi Hautala is a Finnish member of the European Parliament's Green/EFA group.

European Voice  

While the parties squabble, the elderly see their lives and savings ebb away

Carers visit him four times a day to help him in and out of bed and cook his meals. He relies on a walking frame to manoeuvre around his small flat and can only leave home in a wheelchair.

Mr Gower, who has suffered a severe and worsening neurological disorder for seven years, wants to keep as much of his independence as his condition allows. But the former British Rail manager's determination to stay in his own home is costing him dear. He calculates that his life savings are disappearing at the rate of £400 a month as he struggles to pay his care bills. At that rate all his money will be gone in less than two years.

Mr Gower, who lives in sheltered accommodation in Luton, said: "I have no idea what will happen then. It causes me, and a lot of other people like me, a great deal of concern. It's most unjust. I just want to stay in my own home."

Despite the seriousness of his condition, Mr Gower does not get all his care costs picked up because his needs are categorised as "substantial" rather than "critical". His monthly income, from pensions and benefits, is just over £600. But having to pay more than £300 towards his care on top of rent, food and bills, means he pays £400 from his savings each month.

He is one of many hundreds of thousands of frail and elderly people who receive care in their homes ? and many more are in residential care. Many see their savings vanish ? or are forced to sell their homes ? to provide a modicum of dignity and comfort in their final years.

The system is close to breaking point and can only get worse as the expense of looking after a rapidly ageing population escalates. Forty per cent of the population will be 50 or over by the year 2026 ? compared with 34 per cent now ? meaning that another 1.7 million adults will require care.

In a report today the Audit Commission reinforces the message with a warning that councils face a daunting challenge in coping with soaring care costs, yet political leaders have so far baulked at facing up to the unpalatable decisions that will be required to tackle the problem.

Last week the Conservatives launched a poster campaign accusing Gordon Brown of plotting a £20,000 "death tax" on the estates of the newly deceased, and tomorrow the Tories will boycott an emergency conference called by Andy Burnham, the Health Secretary, to debate ways of tackling the funding crisis.

The issue looks certain to feature heavily in the general election expected in May ? and will be given extra potency by the high turnout among older voters. The health spokesmen for the three main parties held secret talks either side of the New Year in an attempt to agree common ground on the issue. They collapsed in acrimony, with Labour and the Tories blaming each other for sabotaging the negotiations.

The fall-out continues. Mr Burnham has accused Andrew Lansley, the shadow Health Secretary, of spreading scare stories about Labour's intentions. Mr Lansley, who says the Government has wasted 13 years in which care could have been reformed, insists he will not go to the conference until Labour has ruled out imposing a levy on estates. Norman Lamb, the Liberal Democrat health spokesman, wrote yesterday to urge Mr Lansley to attend. He said: "We must set party loyalties aside and try to get to grips with this problem."

Michelle Mitchell, charity director of Age Concern and Help the Aged, reflected growing alarm among charities over the mug-slinging between the parties. She said: "The issue of social care is rightly in the spotlight; however it must not become a political football between the parties.

"Millions of older people and their families have been let down for far too long by an inadequate care system. The system is already underfunded and quality of care is often poor. Older people and their families deserve a care system which enshrines dignity and fairness ? unless we act now it will crumble even further as our society ages."

As his savings ebb away, Mr Gower can barely contain his anger at the political point-scoring that has wrecked attempts to overhaul a system universally regarded as unfair. He is so disillusioned over the Government's failure to act that for the first time in 50 years, he will not vote Labour at the election. But the Tories and Liberal Democrats can take no comfort ? he will support an independent candidate.

"All three main political parties have known for the last 20 years that this demographic problem is coming up. They have chosen to totally ignore all the warnings that care is in crisis. They don't want to accept responsibility ? they have all adopted an out-of-sight, out-of-mind attitude."

How does the current care system operate, and how can it be improved?

Q. What is the system at the moment?
A. Anyone deemed in need of care ? whether at home or a residential centre ? is assessed for their personal wealth and the seriousness of their condition. Those who have assets worth more than £23,500, including the value of their home, are liable to meet their care costs.

Q. And why does this system not work?
A. There is simply is not enough money to meet the fast-growing cost of caring for the numbers of people living into their 70s, 80s and beyond. In addition, a "postcode lottery" operates over the provision of services. In some areas people pay out more than £200,000 for their care, while in others they receive it for nothing.
Many councils only provide free care to people assessed as having the highest needs, meaning people who rely on carers for vital help have to pick up the bills themselves.

Q. How has the Government responded?
 A. Slowly and belatedly. It was in 1997 that Tony Blair declared: "I don't want them [children] brought up in a country where the only way pensioners can get long-term care is by selling their home."
A Royal Commission two years later recommended that all personal care should be free. The conclusion was accepted in Scotland, but rejected elsewhere in the UK.
A Government Green Paper last summer proposed the creation of a National Care Service and floated three ways it could be funded. The first would see people and the state sharing the cost; the second envisaged a voluntary insurance scheme; the third would require everyone to pay up to £20,000 into a compulsory scheme, although the payment could be deferred until after death.

Q. What has Labour said on the subject since then?
A. Gordon Brown surprised last year's Labour conference with a promise to provide free personal care at home for 400,000 of the most disabled adults who are above the means-test limit. He said the £670m cost of the scheme would be found in efficiency savings from Department of Health and local authority budgets. Critics retort that his sums simply do not add up.

Q. What do the Tories propose?
A. They would introduce a voluntary scheme enabling people to pay £8,000 at the age of 65 in return for a guarantee of free residential care if they need it. They are about to unveil plans for a similar scheme to cover the cost of care at home.

Q. And the Liberal Democrats?
A. The credit crunch has affected their plans to offer a minimum level of care for all. They are now calling for the parties to come together to agree a joint solution to the funding crisis.

Nigel Morris, Deputy Political Editor

The Independent

Dr Who actor: "I ACCUSE" Ray Gosling of murder!

Nabil Shaban, actor and disability activist has spoken out about what he regards as the media's pro euthanasia stance.

 "Nabil Shaban ACCUSES the British media, and that includes the BBC, of pursuing an identical propaganda exercise as Doctor Josef Goebbels with his notorious pro-"Mercy Killing" movie "I Accuse", as preparation for public acceptance of State-sanctioned euthanasia. Ray Gosling was not brave, he is a murderer and by bragging about it on air, he is putting disabled people and ill people's lives at risk."

Read the article by Clair Lewis  in full:  http://clairlewis.livejournal.com/17621.html

 

 

BBC correspondent Frank Gardner: You can't keep a good man down

Have you been watching the BBC news lately? If you have, then you are sure to of noticed Frank Gardner is back reporting from Afghanistan.

Putting aside the rights and wrongs of the current conflict.  I think Mr Gardner is a very courageous man, particularly given that he now has limited mobility after being shot six times by Al-Qa'eda fanatics. Read a little of his story below (first published in June 2008 from The Telegraph)

________________________________

BBC correspondent Frank Gardner: You can't keep a good man down

Four years after he was given up for dead by the al-Qa'eda fanatics who shot him six times in Riyadh, Saudi Arabia, Frank Gardner, the BBC security correspondent, is now routinely standing when he reports for the corporation. 

"It is not quite as it seems, as I do always have to support myself with a hand on my Zimmer frame, which is usually off camera and, obviously, I have the callipers on," says Gardner, 46, who had to undergo 13 operations after he was paralysed in the shooting.

"It is actually very good for me to get out of my wheelchair from time to time as your organs tend to get a bit compressed if you stay in those contraptions for long uninterrupted periods.


"I don't find it painful to stand, but it would probably be wishful thinking to say I will one day be able to walk again. My spinal nerves were just too badly blasted apart when I was shot."

Gardner has led an active life since the shooting and managed to walk with some pain when he collected his OBE from the Queen in 2005.

In February he took the slalom challenge at the Italian resort of Courmayeur using a specially adapted chair called a "sitski," which he described as "basically a wheelchair without wheels."

He broke the story earlier this month of the top secret documents that had been left on a train from London Waterloo to Surrey by a "very senior intelligence official" working in the Cabinet Office.

Original Source: The Telegraph

George, Editor

New disability shooting club hits the mark

A new shooting with acoustics club is being established in Bangor which will offer a unique sporting opportunity for people who are visually impaired.

The club supported by the Sports Council for Wales and Gwynedd Council is the first of its kind in north Wales.

Marcus Politis, Gwynedd Council’s Disability Sport Wales Development Officer said:

“Our aim is to provide a range of activities within the county so that there is something on offer to suit the needs and interests of everyone. Following a popular taster session held recently, we certainly hope that the new target shooting club which will be the first of its kind in north Wales will prove a popular activity.”

The club will be launched with an open day on Saturday, 20 February (morning session from 10am – 1pm and afternoon session from 12pm – 3pm) with Paralympian, Jonathan Gribbin and Ken Nash from British Blind Sports also in attendance. The launch will be held at the shooting range located at the rear of the North Wales Society for the Blind office, 325 High Street, Bangor.

For more information or to register your interest, contact Jane Eade on 01758 704010 or Marcus Politis on 07766 505 320.

Photograph: The target shooting taster session held recently

Welsh Icons

Abuse of disabled people investigated in ‘Panorama: Why Do You Hate Me?’

Some disabled people are suffering abuse and hostility for no other reason than their disability, an investigation by BBC One’s Panorama has found.

Secretly recorded footage for Panorama: Why Do You Hate Me?, to be shown on Monday, shows a wheelchair user being mocked and threatened in a bar, while in another incident a mother and daughter film an attacker smashing every window on their mobility car.

Panorama reveals just how many such incidents go unrecorded.

The Director of Public Prosecutions, Kier Starmer, admits that the justice system doesn’t always get it right when dealing with so-called “disability hate crime”.

He says: “I think there are lots and lots of incidents of disability hate crime. I think we haven’t collectively picked them up and investigated and prosecuted them in the way we should.”

Crown Prosecution Service figures for last year show there were 299 convictions for England and Wales. That compares to more than 9,500 for racial and religious hate crimes.

In Wales alone last year police recorded 116 such incidents, with just 18 convictions.

Simon Green, a wheelchair user from Bridgend, who presents the programme, secretly filmed a couple of his nights out to expose the hostility and abuse he sometimes experiences.

During one evening he’s confronted by a group of men who verbally abuse him, swearing at him and calling him a “cripple”, and suggesting he can really walk.

Simon, who has been a wheelchair user for six years, says during that time he has been physically as well as verbally assaulted just because he is disabled.

And, though the law has got tough on people who abuse others on the grounds of their race or religion, the attitude towards often low-level but continued abuse of disabled people seems far behind.

Simon also meets Irene Miles, 77, who was born disabled. She and her daughter Lorraine, who is her full-time carer, say they have suffered years of abuse at their Newport home.

Just a few months ago a CCTV camera captured a hooded man running around their vehicle, smashing every window before disappearing down the road. The vehicle is a lifeline for the family.

They’ve contacted police 60 times in the last five years but only this latest incident, which happened last November, has been categorised as a hate crime.

Lorraine says: “I feel as though the police think we’re a nuisance to them. I think now they’re sitting up and taking note but the help for me and my mum has come far too late.”

The family believe their case has similarities with the horrific story of Fiona Pilkington. She killed herself and her disabled daughter in Leicestershire after years of persistent abuse.

Gwent Police are now reviewing the handling of Lorraine and Irene’s case.

Chief Superintendent Paul Symes says: “I will do my upmost to ensure that this is not a Pilkington case for Gwent Police. I’m aware of what the learning was within Pilkington, part of that involved some criticism around some perception that agencies weren’t working together.”

Campaigners say disability hate crimes are too often unreported by victims and under-recorded by police – and that needs to change.

This programme is a version of a report originally broadcast by BBC Wales on 4 January 2010.

Panorama: Why Do You Hate Me?, Monday 15 February 2010, BBC One, 8.30pm

Unreality Prime Time

Please Note: If you are resident in the UK you can now watch this episode of Panorama on BBC iPlayer by following the link below.
http://www.bbc.co.uk/iplayer/episode/b00qykm2/Panorama_Why_Do_You_Hate_Me/

You can also see highlights and further comment on the Panorama website:
http://news.bbc.co.uk/panorama/hi/default.stm

Charities for the disabled merge to face new climate

Two of the leading charities that provide support for disabled people in Britain are merging in the first of what is expected to be a wave of similar tie-ups in the voluntary sector.

Advocacy Partners, which provides independent advocacy services to those with learning disabilities, mental health needs or physical impairments, is merging with Speaking Up, which offers similar services.

The merger was brokered by Breakthrough, the joint venture formed in 2005 between CAN, the social enterprise, and Permira, the private equity firm, which seeks to help established social enterprises to continue growing.

Other such mergers in the voluntary sector are expected as charitable donations and financial support from local and central government are expected to decline. Almost one UK charity or social enterprise in five is thought to have made people redundant during the recession.


A recent survey for Breakthrough of more than 70 leaders of charities and social enterprises found that almost two thirds had considered mergers or acquisitions. Almost four in five agreed or strongly agreed that there should be more mergers in the “third” sector. However, few such mergers have got off the ground until recently, partly because of fears of antagonising donors and because — according to those polled — most such bodies are more focused on helping those they exist to support than on the efficiency of their organisation.

The biggest merger between two British charities was in 2002, when the Cancer Research Campaign joined the Imperial Cancer Research Fund to form Cancer Research UK. Age Concern and Help the Aged joined forces last April to form an organisation soon to named Age UK.

Jonathan Senker, chief executive of Advocacy Partners, will take the same role in the merged organisation — Advocacy Partners Speaking Up. Craig Dearden-Philips, the founder of Speaking Up, will seek election as chairman of the new body’s board.

Times Online

Meet fiery Izzy, Corrie's latest love interest... and the Street's first regular disabled cast member in 50 years

Coronation Street's new love interest has arrived on the famous cobbles - becoming the show's first regular disabled character in its 50-year history.

Wheelchair user Cherylee Houston is joining the soap as new girl Izzy, who meets Kirk Sutherland through an online dating service.

But it is far from love at first sight - and Kirk won't be the only man on the street who gets to see Izzy's fiery personality.

Cherylee, 35, arrived at the Granada studios yesterday to begin filming scenes.

She will make her screen debut on April 16.

She said: '"I'm really excited and well chuffed to be joining the show. I grew up with Coronation Street and I can't wait to get  started.

"I'm really looking forward to getting my teeth into the character.' 

Disabled characters have briefly figured in Coronation Street in the past.

Ryan Connor's friend Phil was played by wheelchair user Richard Sargent, and Emily's niece Freda is played by deaf actress Ali Briggs.

But Cherylee, who has signed up for an initial  six-month stint, is the first actress with a disability to become a regular face.

She has previously appeared in Holby City, The Bill, Little Britain, A Thing Called Love and Emmerdale.

Access co-ordinator Ruth Malkin, of the Disabled People's Network Manchester, said she was pleased Cherylee had been cast.
But she said it was important the programme showed the real problems that disabled people faced.

She added: 'Obviously we think it's a positive thing to see a disabled person on television in a programme which is not a documentary show focusing on their disability.  

'It sounds very interesting but I doubt very much the storyline will go deep enough to show the extent of the environmental and attitude barriers that disabled people have to face on a daily basis.'

A Corrie spokesperson said: 'Izzy is a real firebrand who wastes no time in taking on some of the Street's feistiest females, cutting even the most formidable foe down to size with just one swipe of her razor-sharp tongue.
'She's attracted to bad boys and, due to her own messy romantic history, she's become something of a heartbreaker.

'And when we meet her family we realise her troubled background has played a large part in shaping this complicated young woman.'

Mail Online

Blind young people wanted

Firecracker Films are currently looking for blind and visually impaired people in the UK to get involved in a documentary they are making for the BBC about young people entering adulthood.

They are searching for people who are 15 to 25 years old, highly independent and outgoing, with an active social life. You should be keen to challenge stereotypes and they will want to know whetehr you are in a relationship, looking for love, or just about to start dating.

If this sounds of interest to you or you know someone who might like to find out more contact Paula at Firecracker Films


BBC Ouch!

Advertising man helps spread disabled boy's message for Muscular Dystrophy Campaign

 

An advertising man is spreading a disabled boy’s message across the UK to raise awareness of muscular dystrophy. DAVID MILLS finds out more about the campaign. 

SIX-YEAR-OLD Bradley Addison has Duchenne muscular dystrophy, an incurable condition which causes the muscles to weaken and waste away.

Thanks to advertising man Peers Carter, a hard-hitting poster of Bradley sat in a wheelchair with the words ‘He’d love to walk away from this poster too’ is being displayed at more than 1,000 poster sites across the country.

Peers has been involved with the Muscular Dystrophy Campaign since 1977, when he first created a similar poster of another young boy suffering from the same condition.

More than 30 years later, he has recreated the same poster but this time featuring Bradley.

The photo was shot in a field near Peers's house in Dale Road, Southfleet.

Father-of-three Peers got in touch with the charity to get hold of the old poster as he was doing a memorial piece on a colleague who helped design it.

The 63-year-old said: “That led to them going to Tesco who made the Muscular Dystrophy Campaign their charity of the year.”

Asked how he came up with the line in the poster, he said: “I have no idea, they just come to me when I’m least expecting it, such as in the bath.

“This boy is full of life, he wants to have fun but is stuck in this wheelchair. Yet I’m walking away and don’t feel too good about it. I would like life to improve for him.

“It has the same impact on me.

“The first time I saw it I thought that’s strong.”

Peers added: “It’s a real pleasure to donate my time to this cause.

“Not enough people know about muscle disease and how devastating an impact it can have for children like Bradley.

“I hope that people take notice and help support the charity’s work.”

The director of marketing and fundraising at the Muscular Dystrophy Campaign, Abby Mardon, said: “We’re incredibly grateful to Peers and his art director, Tony Muranka, for their support of the Muscular Dystrophy Campaign and dedication to help us create an amazing campaign.

“It’s vitally important that we tell the stories of children like Bradley who deserve a chance to have a better quality and length of life.”

WHAT IS MUSCULAR DYSTROPHY (MD)?

- There are more than 30 types of MD, a hereditary condition which causes the muscles to weaken and over time leads to increasing disability.

- Duchenne is the most common and severe form of MD, which usually affects boys and is diagnosed at around three years of age with initial symptoms beginning in the leg muscles before progressing to other muscles.

- If the disease spreads to the heart or breathing muscles it can become life-threatening.

- More than 70,000 babies, children and adults in the UK have MD or a related condition. There are 5,000 living with muscle disease in the south east.

- A further 350,000 people are affected indirectly as family, friends or carers.

- Children suffering from Duchenne MD may be in a wheelchair by the age of 10 and the condition can be life-threatening by 30.

- While there is no cure to MD, treatment at limiting its effects includes physiotherapy, exercise, physical aids and medication to improve muscle strength.

- For more information visit muscular-dystrophy.org

News Shopper 

New disabilty laws are widely ignored in region

Livability, the national disability charity, reviewed the region’s services ahead of new social care funding laws set to come in 2011.

Only three of the eight North councils tested in the probe scored more than half marks.

The survey, which was carried out by over 500 young disabled people mystery shopping 103 councils across the UK, looked at how much information was available from councils on Individual Budgets.

An estimated 600,000 disabled people across the North are set to benefit from the new budgets, which are being introduced next year as part of the UK’s biggest ever shake-up of social care funding.

But Livability found local authorities are failing to provide vital information on the changes, undermining the moves to give greater choice and independence to disabled folk.

Half of phone enquiries about Individual Budgets were misdirected and almost a quarter of local authorities were unable to provide any information at all.

In the North East, Gateshead Council, which has run a pilot scheme for the budgets, came 9th in the national table and scored 10 out of 10 for having full information on their website.

But telephone operators still failed to give full details when the customer rang up and scored just five, giving an average score of 7.5.

York also scored full marks for website information and averaged a total of seven. Darlington council scored 6.5.

But Newcastle, Middlesbrough, Cumbria and Hartlepool councils all provided minimal information, with average scores of just 4.5, 2, 1.5, and 1.

Durham County Council failed to display any details at all - and failed the test.

Mary Bishop, chief executive of Livability, said: “The results of our research are extremely worrying.

“Individual Budgets have the potential to transform the lives of disabled people by giving them choice and control and yet awareness of them is woefully inadequate.”

Mark Harper, Shadow Minister for Disabled People, added: “It is clear from the report’s findings that there is still a great deal more to do to ensure that disabled people can take advantage of individual budgets.

“All the evidence says that disabled people with an individual budget have more control of their lives and better health outcomes.”

Baroness Howarth, President and Chair of the board of Trustees for Livability this week presented the charity’s concerns to Phil Hope, Minister for Care Services, and the charity will also deliver the damning findings to every MP and local authority in England.

Sunday Sun

Blind peer takes a message of solidarity and support to the disabled in Gaza

EXCLUSIVE INTERVIEW - With Lord Colin Low of Dalston

Amid all of the political wrangling and turmoil in the Middle East, it’s nice to sometimes come across a more uplifting, human interest story and one such story is the recent visit of Lord Colin Low of Dalston to Gaza. At first glimpse there is nothing particularly moving about a parliamentarian visiting a war-savaged region. It happens all the time and Lord Low was one of many on this particular visit; one of 60, in fact, including MPs and MEPs, making up the largest delegation of European politicians ever to go to Gaza. However, when you realise that Lord Low has been blind from birth, his visit takes on a whole new dimension. Undertaking a journey to Gaza is fraught enough with obstacles and hardship for even the most able-bodied of people, so for a blind person to volunteer to make the journey is an incredibly brave and commendable act.

MEMO sat down with Lord Low in the House of Lords earlier this week and asked what motivated him to make such an arduous journey. He told us that, in addition to the fact-finding aspect that all the delegates were pursuing, they all wanted “to express solidarity with and support for the residents in Gaza.” However, Lord Low also found himself in a unique position whereby he was able to offer one very special message. In a speech he gave at a very early stage of the visit he announced that he would like to deliver “a message from the disabled people of Europe and the world.” He told them that he wanted to express “a message of solidarity and support and… to say to the people who had been injured in the hostilities that there was life after disability and the people of the world are with them.” He said, “This I think, caught their imaginations”. He was very happy that his message was well received. “It was very clear to me that the fact that I, as a totally blind person, had made the journey to Gaza struck a chord with our hosts and they accorded me great courtesy and showed me a great deal of consideration during the visit.”

His sentiment of support was certainly appreciated by all Gazans but it had a special resonance for the disabled people of Gaza, many of whom fit into two unfortunate categories. There are those who have been injured and disabled as a direct result of Israeli military actions, such as the Israeli assault on Gaza in December 2008-January 2009; and those who are disabled, for whatever reason, and whose disability is compounded by the illegal siege Israel imposes on Gaza thus restricting their access to treatment, medication, surgery and in many cases life saving treatment.
One encounter that was particularly moving was Lord Low’s meeting with two boys who had been blinded in the horrific Israeli attack just over a year ago. “I was very struck by the spirit of these boys,” he said, “that they seemed undaunted.” He used his own experience to comfort them and he assured 11 year old Louai Subh, “that he would find he could do things with his hands that other people do with their eyes.” He was very pleased that the boys were being educated in a school for the blind and were learning Braille but in that respect they are among the lucky ones as such facilities are rare indeed in Gaza.

Lord Low is now endeavouring to help people like Louai by getting them the resources that they so desperately need. During his visit he met with the member of the Legislative Council who holds the disability portfolio and they discussed the needs of the disabled. Lord Low told MEMO, “She is anxious to set up an organisation for blind people and I’m taking steps to put them in touch with the World Blind Union and also the International Council for the Education of People with Visual Impairment to see if we can get an educational programme going in Gaza.” His priority now is “to try and mobilise some resources that would actually help the disabled people of Gaza who have great needs.”

Lord Low is also currently arranging meetings to see the British Foreign Secretary as well as Baroness Cathy Ashton, the EU Foreign Minister. He made it very clear what needs to be impressed upon them: “The blockade that is currently being imposed is a breach of the human rights of the people of Gaza… the European Union and the British Government need to do more than just utter warm words, fine words, on the subject. They need to use, at a minimum, the leverage of trade sanctions because Israel relies on trade from the UK and Europe. It’s very important. So they need to use what bargaining power they have and that certainly is something we will be impressing on both the Foreign Secretary and Cathy Ashton.”

The visit clearly had a profound effect on Lord Low and when I asked about the scale of destruction in Gaza he told us what the delegates saw: “Factories and farmland that had been destroyed. A community of about three or four hundred houses we went to see had just been razed to the ground. It was just a bomb site and we saw inhabitants, residents living in conditions of the most abject squalor. Three or four generations just in a tent with no washing facilities, just a rudimentary fire in a tray on the ground for cooking, I mean, unimaginable conditions.”

Incredibly, Lord Low said that his visual impairment was in no way an obstacle to him reaching out to the people of Gaza. On the contrary, very movingly, when I asked what impact this visit had on his life at a personal level he replied, “I think what it has done is that it made me aware that my disability was actually a powerful instrument for establishing human contact with people in other cultures, perhaps with those who had similar problems… it became clear to me that it actually was a bridge and it was a way of reaching out to people.”
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 M.E.M

Cabinet member for adults and old people Cllr Liz Phillips opposes Personal Care at Home Bill

 
THE cabinet member for the elderly has objected to a Government bill which proposes to give the most needy elderly more free care at home.

Lib Dem councillor Liz Philips, cabinet member for adults and older people, has put her name to an open letter opposing the Personal Care at Home Bill, which proposes removing a time limit in the amount of free care allowed at home for those in the greatest need.

The 74 named England-wide councillors opposing the bill, claim it is “unclear and unfunded” and that it could impact on local services through possible cuts and rises in council tax to pay for the extended service.

Cllr Philips told the Guardian: “The principle of getting more people to stay in their own homes and have free extra care would be wonderful.

"But there is no such thing as a free lunch and if they (the Government) don't fully fund it, it will be at the expense of other services.

“The bill is an eye-opener because the Government doesn't realise what is out there and realise that more money must be put in social care.”

Cllr Philips said the bill proposes that local authorities will receive funding for the service in the first year, but thereafter will receive a contribution and have to find the extra cash through “efficiency savings”.

Matthew Burgess, whose mother, Miriam, of Winslow Grove, Chingford, received a poor standard of home care when the council first contracted out the service to Leonard Cheshire Disability (LCD), supports the notion of the elderly being cared for in their home - but said the council needs to choose its service provider carefully.

He said: “I would like to see more regulation on the type of care given in the home. The council should not use companies who are more concerned with making a profit than getting the best carers and giving them decent pay.

“It needs to be closely regulated because you don't want to see money being put in the wrong place.”

Following “teething problems” during the hand over of home care services from in-house to LCD, a month-long transition is being held in March from LCD to Westminster Home Care, which was awarded the contract last month.

The Personal Care at Home Bill is due to be discussed in detail in the House of Lords on February 22.

Waltham Forest Guardian