BBC watchdog: Virgo Health Care

Yesterday you may of seen the BBC programme 'Watchdog' which included in their Rouge Traders piece Virgo Healthcare (formerly ABM Mobility) .  If you didn't see the programme please follow the links at the bottom of the post to see a transcript and watch the programme on BBC I-player.

While people are quite rightly outraged at the sales practices of companies like Virgo Healthcare, the sad truth is they are all to common.

If your thinking of buying a piece of mobility equipment, such as mobility scooter, power chair or manual wheelchair. Or a 'daily living aid' such as a bathlift, adjustable bed or stairlift, here are are just a few easy ideas to help make sure you don't get taken for a ride when buying that scooter.

If you are buying off the internet.

Make sure you know who your buying from by checking to see that they show their full contact details on the site. (Company Name, Address and a land-line phone number).

See if they are a member of the British Healthcare Trades Association, either by looking for their logo,which looks like the one on the right, or by finding them on the BHTA's list of  members at www.bhta.net/find-a-bhta-member.aspx 

Please bear in mind though that not all healthcare suppliers are BHTA members. Not being a member does not mean that they are automatically bad, but its just something you should bear in mind when deciding where to buy from.

When paying for your purchase via the internet always use a credit card, or for smaller items you can sometimes use paypal.  All Credit Card payments made over the value of £100 are covered by section 75 of the consumer credit act, so if the company goes burst, fails to deliver or delivers faulty goods you can claim back your money from your credit card company.  For more about this, see this section on Moneysavingexpert.com: http://www.moneysavingexpert.com/shopping/section75-protect-your-purchases

Its important to emphasize, section 75 only applies to Credit cards Not Debit cards or cheques.  Debit cards are a form of instant payment where the money (if available) goes immediately from your bank account into theirs, rather like cash ... Cheques could be said to be a little safer as you do at least have a small window of opportunity where you could cancel the cheque before it is cashed. But that depends on you Bank's own policy and you should check with your local branch for information about that.


Paypal use a their own complaints procedure, please refer to their site for more details: www.paypal.co.uk

Make sure you know what your getting!

Sounds obvious perhaps, but don't just rely on the picture, check out the item description, ask questions and if the price seems to be good to be true?  Well you know what they say!

Sales people / Demonstrators

If you have arranged for a sales person to call on you in your home there are a few simple things you should do.

Nobody likes to consider or admit that could be vulnerable to high pressure sales, but the fact is regardless of how fit you are of how mentally alert you may feel,  its all to easy to find yourself in difficulty when dealing with slick sales people.

So whenever possible make sure that someone else, like a friend or relative, is present when the sales person calls.  If that isn't possible ask a friend, relative or neighbour to phone about half an hour after the appointment starts.  That phone call both gives you the opportunity to gather your thoughts and could also give you either an excuse to ask the sales person to leave or give a signal to the person who you asked to phone you that you need them to intervene.

Let me explain.  I have used this method myself for both sales people and dodgy dates ...

A friend rings my mobile after about half an hour of the sales person calling and asks if I'm okay, if everything is fine then I tell them that and explain to the quizzical sales person after the call that it was just a friend checking up on me.  If the sales person is genuine in their interest in your well-being then they shouldn't have a problem with a friend checking on you.

If you are in a situation where you feel pressured and you either need an excuse to get out or you need to be rescued, but feel you can't say that directly, then use a pre determined phrase. One of my favourites is "How's Uncle Bob".  My friend will then ask if I'm okay to which I will simply answer "yes" or "no" - they will then ask if I need rescuing, again a simple "yes" or "no". "Yes" means "Help - Come Now!", "No" means "I'm Okay, but check again in half an hour"

It seems rather convoluted, but its got me out of scrapes with both sales people and blind dates!

You can always offer tea.  Not only is it polite, but going off into the kitchen to make a cup of tea will give you a few moments to gather your thoughts.  If they don't want tea go and make one for yourself anyway, even if you then leave it to get cold.  Besides one of the high pressure sales tactics involves trying to wear you down, a cup of tea and biscuit will help keep your energy up.  If you find that the sales person follows you to kitchen and you still need a moment to yourself, make the tea then  pop to the loo, the can't follow you in there.

Its always difficult when it comes to discussing things like price, particularly for older people who maybe more reserved about these things.  But there are two really important questions you need to ask yourself before signing or agreeing to anything.

1) Does what I'm being offered do what I need?

2) Can I afford it?

If you have any doubts, don't sign or agree to anything and certainly do not hand over any money or financial details. At the end of the day, if the sales person represents a reputable bushiness, that is interested in your well-being and providing a good service, they should be prepared to come back another day. Don't feel embarrassed or pressured into making a decision 'then and there' which you are not happy about. You are the customer and just like buying from a shop, if you are not happy, don't buy.

Some less reputable salesman will rely on the 'obligation factor' to make a sale - Meaning that they are banking on your sense of guilt if you don't buy.  After all "they have come all this way" or they "have made a special effort just for you" .  No, remember you are under no obligation.

Some Golden Rules When Buying 

Here are some golden rules for when you are buying any sort of mobility or 'daily living' equipment.

Questions you need to ask yourself:
Does what I want to buy do what I need it to do? 
Am I being asked to buy something I don't want or need?
Is the company (or the person)  able to offer after sales help if something breaks or I change my mind?
Is it at a price I can afford?

If the answer to any of these questions is no or doubtful, don't buy.



What To Do If Something Goes Wrong

Goods sold over the internet (and TV), through a catalogue or directly to you in your own home are subject to a 7 day cooling off period.

For extensive details about that see this (very long) url leading UK Government web page about 'Distant Selling':
http://www.businesslink.gov.uk/bdotg/action/layer?=en&r.s=sc&r.l1=1073861169&r.lc=en&r.l3=1074033669&r.l2=1079589261&topicId=1074033669&r.i=1073792577&r.t=RESOURCES&=en&r.s=sc&r.l1=1073861169&r.lc=en&r.l3=1074033669&r.l2=1079589261&topicId=1074033669&r.i=1073792577&r.t=RESOURCES

In simple terms, if you buy anything through the methods described above, you have 7 days in which to change you mind. But you must tell the company you have changed you mind by letter, fax or Email. A phone call, while useful for finding out how to go about things is the first thing you should do, cancellation of an order can only be done in writing.

If you find a older relative or person with a disability has agreed to buy something as a result of high pressure sales tactics there are a number of things you should do.

Ring the company and just ask if they would be willing to cancel the order.
Write to the company and repeat your request to cancel the order and remind of their obligation to provide a cooling off period.

If after the initial phone call you feel that they are not willing to cancel the order ...

Contact your local trading standards office as soon as possible (your county council will have their details) and seek advice

If a payment was made with a credit card, ring the card company and ask their advice, they maybe able to halt the payment.

If a cheque was used, contact the cheque holders bank, the may be able to cancel the cheque.



In Conclusion

Choosing and buying any sort of equipment to help if you have a disability or you are an older person, is really complicated (even if you have been doing it for 20 years like me).  If you have any doubts at all you should ask your Occupational Therapist, Social Care Team or GP for advice before making any purchase.

Despite the report on Watchdog/Rogue Traders, there are many decent companies out there whose main concern is providing good products and a good service. However they are still in business to make money. And just like any big purchase, you must do your research and make sure you are happy before making any sort of commitment to buy.

Additional Links 

BBC Watchdog/Rouge Traders article about Virgo Healthcare,
http://www.bbc.co.uk/blogs/watchdog/2010/06/rogue_virgo_healthcare.html

BBC Watchdog on  Iplayer
http://www.bbc.co.uk/iplayer/episode/b00sqj73/Watchdog_10_06_2010/
This programme is only available for seven days

British Healthcare Trades Association (BHTA)
http://www.bhta.net/default.aspx

 Section 75 from Moneysavingsexpert.com
http://www.moneysavingexpert.com/shopping/section75-protect-your-purchases

UK Government web page about 'Distant Selling'http://www.businesslink.gov.uk/bdotg/action/layer?=en&r.s=sc&r.l1=1073861169&r.lc=en&r.l3=1074033669&r.l2=1079589261&topicId=1074033669&r.i=1073792577&r.t=RESOURCES&=en&r.s=sc&r.l1=1073861169&r.lc=en&r.l3=1074033669&r.l2=1079589261&topicId=1074033669&r.i=1073792577&r.t=RESOURCES


George, Webmaster
www.disabilitydirect.org

Please note: this article (post) is intended to supply information and opinion only and is not legally binding.

Not Dead Yet UK Launches "The Resistance Campaign"

(The picture at the right is of disability activists in the UK. Most in the picture are using wheelchairs.  Several are holding signs.  There are two signs that can be read.  One says "You cut our money - you cut our lifeline;" and the other says "Increased poverty/Increased disability").

Not Dead Yet UK has launched "The Resistance Campaign," urging all Members of Parliament (MPs) to sign on to the 'Resistance' Charter 2010 - protecting the lives of disabled and terminally ill people.

Key points from the charter:

· A recognition that disabled and terminally ill people should have the same legal protection as everyone else
· A commitment to support disabled and terminally ill constituents to access the health, social and other services that they need
· A commitment to oppose any change to the current law, which makes assisted suicide illegal.

 The campaign has gotten coverage on the BBC, The Guardian, and Public Service.

Here's an excerpt from Jane Campbell's column about the campaign in The Guardian:

Disabled and terminally ill people have had to deal with fear, prejudice and discrimination since the beginning of time. Our lives have been devalued by statements such as "he/she'd be better off dead". In recent years, calls for a change to the law prohibiting assisted suicide have grown louder and more frequent. They capitalise on fear. Fear of pain, fear of loss of dignity, fear of being a burden. And, yes, fear of witnessing those fears being felt by those we know and love. The solution offered to the fear of disability and illness is final: suicide.

Yet suicide is not well thought of in our society. It is "committed" by the mentally ill and those unable to face the future. In both cases, society does all that it can to prevent suicidal thoughts being enacted. Life is too precious to be solely entrusted to individual action. That society is willing to protect us, even from ourselves in times of personal crisis, defines our – and its – humanity.

However, those seeking a change to the law on assisted suicide say such ideals have no place when considering severely disabled and terminally ill people. Such lives, it seems, are not so precious: ending them prematurely should be a matter of individual choice. Perversely, if you can take your own life without assistance, society generally strives to protect you; but, if assistance to die is needed, they argue, it should be provided. The option to choose the time of one's death is to be reserved for those for whom assistance is required.

No equality there. Yet many see this as irrefutably logical and compassionate.

We here in the US applaud our brothers and sisters in the UK for continuing to present a powerful resistance to policies that endorse the ideas that disabled people are better off dead, as good as dead - and cheaper if we're dead. --Stephen Drake 

 

Not Dead Yet (Blog)

Deaf and disabled artists chosen to Go Public for 2012

• Date: 4 June 2010
• Region: Arts Council England, South East

Sarah Scott, 2010. Photo courtesy of Sarah Scott

Three south east Deaf and disabled artists have been awarded £55,000 to take their work into the public realm.

Sarah Scott, Lorna Giezot, and Zoe Partington-Sollinger were chosen for the Go Public art commissions by two Arts Council England regularly funded organisations, arts agencies Dada-South and Artpoint.

Go Public, launched in 2009, is a two-year initiative that aims to raise the profile of the unique and inspiring contribution Deaf and disabled artists make to contemporary society.

The initiative is part of Accentuate, a transformational programme of 15 projects that seeks to change perceptions and offer a wide range of opportunities across the south east to showcase the talents of disabled people.

Accentuate is funded by Legacy Trust UK, SEEDA and regional cultural agencies, including Arts Council England.

All of the chosen artists will exhibit their commissions across the south east, ahead of the London 2012 Olympic and Paralympic Games.

The winning commissions include plans for a project that creatively documents the impact of yoga on disabled participants; a scientifically mapped and transmitted journey through urban space; and a tactile glowing resin door sculpture.

The commissions present an opportunity for artists to showcase their work in new and innovative ways, sometimes for the first time.

For multimedia visual artist and designer Lorna Giezot, Go Public will support her to create her first large-scale public work.
Lorna says her resin doorway represents the unknown, but also the possible: 'The ability to look through the sculpture to see what is on the other side breaks down that fear of the unknown associated with many metaphors, including disability and disabled people.'

Conceptual artist Zoe Partington-Sollinger, also an Arts Council England West Midlands Regional Council member, hopes that her Go Public project will influence urban planners to consider the needs of Deaf and disabled people.

Zoe said: 'My idea puts Deaf and disabled people at the centre of the creative process, and by capturing scientific data, informs that process in a useful and groundbreaking way.'

'We are delighted that these exceptional artists have been selected,' says Stevie Rice, Director of Dada-South, the development agency for Deaf and disabled artists in the south east.  'I have no doubt that the work will seek to engage and challenge audiences' perceptions and will give a much needed opportunity for disabled and Deaf artists to present their work in the public realm.'
‘Go Public has enabled Artpoint to further understand the needs of disabled artists in the south east,’ says Kevin Wilson, Director of Artpoint, the public art agency for the south east. ‘It continues to be a very rewarding process to support disabled artists in all stages of their development.’
In addition to the three large awards, Greek installation artist Vicky Vergou also won a smaller research and development award.

Applications for the Go Public public art commissions were accepted from emerging and established artists living or working in the south east. Applicants then underwent a rigorous and competitive commissioning process.

Go Public offers further opportunities for disabled and Deaf artists this year including workshops on the development and delivery of public realm initiatives.

For further information about Go Public or Accentuate, see their website http://www.accentuate-se.org/go-public

Arts Council England

Heavy Load: UK punk band w/ learning-disabled members (BBtv)

Today on Boing Boing tv — a sneak preview of Heavy Load: A Film About Happiness, a new documentary about a UK punk band whose members include people who have developmental disabilities. ’70s punk star Wreckless Eric describes them as “a triumph of dysfunctionalness,” and even Kylie Minogue (they’ve covered a hit song of hers) has become a fan. The band says their mission is… …to demonstrate that disability rocks. There are few genres left in music that have yet to be defined. Heavy Load have unwittingly created a brand new one. The band is also behind a campaign called “Stay Up Late” which advocates for the right of cognitively disabled people to be allowed to go out, supervised, to live music shows and — well, stay out late enough to actually see and hear the show. Again, from the band: We play gigs all over the country and we have noticed that something strange happens at 9.00pm — people start to go home. Heavy Load are fed up with people with learning disabilities leaving club nights and gigs early because their staff finish their shifts at 10pm. This means they are missing out. If this happens to you: You need to talk about this with your friends, support workers, family and advocates. Our ‘Stay Up Late’ campaign is to make managers and staff know that we want them to plan ahead and talk to us about what we want to do… The full-length documentary premieres on the US cable network IFC on June 23rd, 9PM ET/10PM PT, and again on 24th June.

Teach Our Children

Urine Test for Autism

Children with autism have a different chemical fingerprint in their urine than non-autistic children, according to new research published tomorrow in the print edition of the Journal of Proteome Research.

The researchers behind the study, from Imperial College London and the University of South Australia, suggest that their findings could ultimately lead to a simple urine test to determine whether or not a young child has autism.

Autism affects an estimated one in every 100 people in the UK. People with autism have a range of different symptoms, but they commonly experience problems with communication and social skills, such as understanding other people's emotions and making conversation and eye contact.

People with autism are also known to suffer from gastrointestinal disorders and they have a different makeup of bacteria in their guts from non-autistic people.

Today's research shows that it is possible to distinguish between autistic and non-autistic children by looking at the by-products of gut bacteria and the body's metabolic processes in the children's urine. The exact biological significance of gastrointestinal disorders in the development of autism is unknown.

The distinctive urinary metabolic fingerprint for autism identified in today's study could form the basis of a non-invasive test that might help diagnose autism earlier. This would enable autistic children to receive assistance, such as advanced behavioural therapy, earlier in their development than is currently possible.

At present, children are assessed for autism through a lengthy process involving a range of tests that explore the child's social interaction, communication and imaginative skills.

Early intervention can greatly improve the progress of children with autism but it is currently difficult to establish a firm diagnosis when children are under 18 months of age, although it is likely that changes may occur much earlier than this.

The researchers suggest that their new understanding of the makeup of bacteria in autistic children's guts could also help scientists to develop treatments to tackle autistic people's gastrointestinal problems.

Professor Jeremy Nicholson, the corresponding author of the study, who is the Head of the Department of Surgery and Cancer at Imperial College London, said: "Autism is a condition that affects a person's social skills, so at first it might seem strange that there's a relationship between autism and what's happening in someone's gut. However, your metabolism and the makeup of your gut bacteria reflect all sorts of things, including your lifestyle and your genes. Autism affects many different parts of a person's system and our study shows that you can see how it disrupts their system by looking at their metabolism and their gut bacteria.

"We hope our findings might be the first step towards creating a simple urine test to diagnose autism at a really young age, although this is a long way off - such a test could take many years to develop and we're just beginning to explore the possibilities. We know that giving therapy to children with autism when they are very young can make a huge difference to their progress. A urine test might enable professionals to quickly identify children with autism and help them early on," he added.

The researchers are now keen to investigate whether metabolic differences in people with autism are related to the causes of the condition or are a consequence of its progression.

The researchers reached their conclusions by using H NMR Spectroscopy to analyse the urine of three groups of children aged between 3 and 9: 39 children who had previously been diagnosed with autism, 28 non-autistic siblings of children with autism, and 34 children who did not have autism who did not have an autistic sibling.

They found that each of the three groups had a distinct chemical fingerprint. Non-autistic children with autistic siblings had a different chemical fingerprint than those without any autistic siblings, and autistic children had a different chemical fingerprint than the other two groups.

By Imperial College London - Jun 4, 2010 9:57:32 AM

Disabled World

Please sign the Resistance Campaign Petition on behalf of terminally ill and disabled people

Letter to the editor: 

Dear All, Would you give a few minutes of your time to help boost an important initiative on behalf of terminally ill and disabled people? Leading Disability Rights Group Not Dead Yet UK, yesterday launched 'the Resistance Campaign', calling on all MPs to sign a charter pledging their support for: 1. Providing good services for disabled and terminally ill people 2. Opposing any change in the law to allow assisted suicide or euthanasia. The campaign is  backed by Care Not Killing and supported by leading disability rights groups including RADAR and UKDPC. It is a response to continued efforts by the pro-euthanasia lobby to change the law at a time when many people in vulnerable situations are already struggling to make ends meet and are fearing the consequence of further health and benefit cuts. Would you take a few minutes to: 1. Sign the petition at calling on MPs to act 2. Email your own MP via the website link above (it's very straight forward) 3. Make the campaign known to others Not Dead Yet Press Release Not Dead Yet Media Briefing Press coverage, News, Stories, Resources and Updates Thanks so much for your support Peter Saunders Campaign Director Care Not Killing Alliance www.carenotkilling.org.uk

LINCOLNSHIRE PROJECT SHORTLISTED FOR NATIONAL LOTTERY AWARDS

A disability sports and physical activity project in Lincolnshire has been shortlisted for a National Award.

The Lincolnshire Disability Inclusion Project, facilitated by the Lincolnshire Sports Partnership, has been shortlisted for the ‘Best Sports Project’ at the National Lottery Awards 2010.

The project, which encourages people with disabilities and elderly people to get involved with sport in their community, has established 34 New Age Kurling clubs throughout Lincolnshire.

Currently, about 1600 people have been involved in the project, with 376 of them not being involved in physical activity in the past year. The average age of those taking part is around 50, but anyone, of any age can take part. Many children are coming along for the sessions that their grandparents enjoy.

Ian Brown is the Project Officer for the Lincolnshire Disability Inclusion Project. He says:

“The project has gone from strength to strength. We have created an inclusive environment where anyone and everyone can enjoy sport and have fun. It has been very well received by the Over 45s, and one 60 year-old woman said that she has more friends now than ever before. You can really see how it enhances people’s lives.”

Tom Chalmers, 71, is a member of the South Witham Kurling Club. He said:

"The social side of New Age Kurling is fantasic. For a village like ours, with not many people under 50, we don't like to just sit in the pub, but this is great for socialising and meeting our neighbours."

Maureen Reader is the coordinator of the South Witham club, she said:

"We have some of our members who live on their own, and this is a great way for them to get out the house, enjoy a bit of exercise and most importantly, have fun!"

Nine projects have been shortlisted for the award, and the Lincolnshire Disability Inclusion Project, is the only one in Yorkshire and the East Midlands. Three projects will reach the final, and attend a glittering award ceremony in London, which will be aired on BBC1.

The Lincolnshire Sports Partnership needs your help by voting for the project in the two weeks of public voting which opens at 9am on 1st June 2010, and continues until 12noon on 18th June 2010.

Visit www.lotterygoodcauses.org.uk/awards to vote for the Lincolnshire Disability Inclusion Project or call our dedicated phone line on 0844 686 5969, calls cost 5 pence.

For a direct link please click below:
http://www.lotterygoodcauses.org.uk/awards/shortlistitem.cfm?id_category=6&id_entry=144

Volunteers from under-represented groups 'cost £2,000 each'

By Ben Cook, Third Sector Online, 3 June 2010 

Report from Commission for the Compact says training, expenses and childcare costs all contribute

Recruiting and supporting volunteers from under-represented groups costs third sector organisations an average of £2,000 per volunteer, according to research published yesterday by the Commission for the Compact.

The Costs, Barriers and Benefits of Involving Volunteers from Under-Represented Groups says modifications to premises, language training, travel expenses and childcare all contribute to the costs.


But the report says cost is not the only barrier to under-represented groups - such as disabled people, refugees, asylum seekers and single mothers - becoming volunteers.

"Individuals from under-represented groups are likely to face access, childcare, transport or self-esteem issues and organisations can encounter issues such as the availability of Criminal Records Bureau checks, language barriers and additional staff time required to support under-represented volunteers," said Nick Drew, policy adviser at the commission.

The research was carried out by CSV Consulting and Manchester Metropolitan University on behalf of the commission.

It says that involving volunteers from under-represented groups offers benefits such as using their specialist knowledge and language skills, and promotes community cohesion.

The Compact, the agreement that outlines how the public and voluntary sectors should behave towards each other, says organisations should identify groups of people who are excluded from volunteering and encourage their involvement.

Third Sector Online

Benefit scheme branded ‘disaster’ by advice bureau

A controversial welfare benefit is causing huge “misery and distress” for hundreds of sick and disabled people locally, according to the Citizens Advice Bureau (CAB).

A national report by Citizens Advice Scotland demonstrates the failures of the Employment and Support Allowance (ESA), which was introduced 18 months ago to replace Invalidity Benefit. It was intended to help more sick and disabled people get into work.

But in reality, the CAB report reveals, ESA has failed some of the most vulnerable people in the community – passing them as fit for work when they are in fact nowhere near capable of holding down a job.

Shetland CAB manager Les Irving said: “ESA has been a complete disaster for many sick and disabled people in this area. It was introduced 18 months ago, and right from the beginning it was clear it was beset with problems. For one thing, there are huge delays and administrative problems, so people’s payments are often late. But even worse than that is the high number of claimants who are told they are ‘fit for work’ when in reality they can often barely walk or even stand up.

“Here in our office in Lerwick we have seen people with serious illnesses like cancer, Parkinson’s disease, MS and severe mental illness being told they have to get work or lose their benefit. These are not ‘scroungers’ – many of them have worked for years, paying their taxes into the welfare system because they thought it would be there for them if they were ever unlucky enough to need it. Now they are in that position and they are finding the ‘safety net’ has been taken away. It is deeply unfair.”

Mr Irving said the report revealed that 68 per cent of ESA claimants were judged to be fit for work. That was a huge number, and many more than were claiming the old benefit.

He said: “We accept that some sick and disabled people are of course able to work, and we fully support efforts to get them into a job. But the work has to be suitable for them, and sensitive to their condition. And such jobs are few and far between.

“But even more worrying is the number of people who are told they must find work when they really are not fit enough. The trouble is that the ESA assessment interviews often take no account of the detail of a person’s medical situation, and seem concerned only at ticking boxes so they can pass as many people as possible.
“They reject evidence from the client’s GP, for example, and ask only the most basic general quest­ions – which are often not relevant to the person’s condition. This is why so many people passed as fit to work are in fact anything but.”

Mr Irving said people could appeal against the decisions, and CAB believed the high number of appeals which were successful was a sign of the failing system. Across Scotland 70 per cent of such appeals were successful, with the original decision being overturned, and that figure was borne out locally.

He said: “Over about the past 12 months we have lodged 33 ESA appeals here, which is 65 per cent of all our appeals. A total of 20 cases are still pending, many for over six months, which suggests the tribunal system is in difficulty if not actually in meltdown. Of the remaining 13, we withdrew three appeals, nine were successful and one was lost.

“Of those appeals actually heard this gives us a 90 per cent success rate. Of course it’s good that we get the fair result for the client, but the fact that so many appeals are successful does show that there is something badly wrong with the decision-making process in the first place.

“The time taken up in helping with these appeals is considerable. Our benefits advisers estimate that 50 per cent of their time is taken up dealing with ESA cases alone – and that’s time they cannot give to other clients.
“So we are calling for the whole ESA to be reviewed. As it is, the government plans to expand it to include millions of other sick and disabled claimants. They urgently need to sort out these problems before it does even more damage.

“We need a benefits system that treats people fairly and with dignity. Certainly local people here deserve nothing less.”

The Shetland Times

Disabled people need help to live, not die

Jane Campbell

MPs must listen to the fears of disabled and terminally ill people and protect them from changes to the law on assisted suicide.

I've been a campaigner for most of my life. I've not been alone. I've worked with other disabled people and great allies in parliament and elsewhere. Mostly, what we've wanted for disabled people has been almost universally applauded: better access, more support, equal rights. Opposition came from those holding the purse strings but we kept badgering away, arguing that equality for disabled people was good for everyone in society. By strength in numbers we scored notable victories, such as the Disability Discrimination Act. The wider public accepted that it was wrong for disabled people to receive inferior treatment.

Disabled people are still campaigning but this time we don't want change. We're united in wanting to keep things the same. How does one argue for the status quo? Chanting, "What to de want?" "No change", "When do we want it?", "Always" seems absurd.

Why bother at all? Because this could be the most important campaign of all, truly a matter of life and death.

Disabled and terminally ill people have had to deal with fear, prejudice and discrimination since the beginning of time. Our lives have been devalued by statements such as "he/she'd be better off dead". In recent years, calls for a change to the law prohibiting assisted suicide have grown louder and more frequent. They capitalise on fear. Fear of pain, fear of loss of dignity, fear of being a burden. And, yes, fear of witnessing those fears being felt by those we know and love. The solution offered to the fear of disability and illness is final: suicide.

Yet suicide is not well thought of in our society. It is "committed" by the mentally ill and those unable to face the future. In both cases, society does all that it can to prevent suicidal thoughts being enacted. Life is too precious to be solely entrusted to individual action. That society is willing to protect us, even from ourselves in times of personal crisis, defines our – and its – humanity.

However, those seeking a change to the law on assisted suicide say such ideals have no place when considering severely disabled and terminally ill people. Such lives, it seems, are not so precious: ending them prematurely should be a matter of individual choice. Perversely, if you can take your own life without assistance, society generally strives to protect you; but, if assistance to die is needed, they argue, it should be provided. The option to choose the time of one's death is to be reserved for those for whom assistance is required.

No equality there. Yet many see this as irrefutably logical and compassionate.

It was the realisation that the majority of disabled and terminally ill people were not being heard in this debate that led to the formation of Not Dead Yet UK. We joined with other groups in opposing the two most recent attempts to change the law. In each case the House of Lords was decisive in rejecting calls for assisted suicide. However, the euthanasia campaigners have vowed to try again in the current parliament.

If they can make it legal for the life of a single person to be prematurely ended, they will then seek to broaden the criteria. Once early death becomes an "option", it will gain a respectability that will erode the resolve of many people experiencing personal difficulties. Not only will it enter our heads, it will also enter the heads of our families and friends, those who provide us with health and social care support and, ultimately, those holding the purse strings.

How much more convenient for all if turkeys see voting for Christmas as exercising personal choice. No wonder disabled and terminally ill people are fearful of all attempts to weaken the current law. For any change would fundamentally alter not only how we are seen but also how we are treated and the care that we receive.

Campaigning to keep things as they are, to keep us safe, is not easy to do or explain. But we have our chant, "Nothing about us, without us". Our lives must not be given away without our resistance being heard. Indeed, Resistance is the name of the campaign we are launching today. We have a short, five-point charter we want all MPs to sign. It calls on them to listen to disabled and terminally ill people in their constituencies who fear any change to the current law. We know what it is to be close to death. We want help to live, not help to die.

 The Guardian

DISABILITY BENEFIT: 2M CLAIMANTS 'ARE FIT ENOUGH TO WORK'

ALMOST two million people on long-term sickness and disability benefit may be well enough to do some kind of work, figures suggested yesterday.

Work and Pensions Secretary Iain Duncan Smith called it a “tragedy” that someone on incapacity benefit for more than two years was more likely to retire or die than get a job.

In a move that would shock the fictional skivers of Channel 4’s Shameless, all 2.6million incapacity benefit claimants will be reassessed to check if they could do at least some work. 

New claimants already have to undergo medical tests to determine whether they qualify for the replacement benefit, the Employment and Support Allowance.

According to figures from the Department for Work and Pensions, initial assessments found two-thirds of new ESA claimants were capable of some kind of work, including those who left the system before tests were complete.

If the same results applied to the 2.6million people currently on incapacity benefit, 1.8million would be able to do some work, including 860,000 who would be fully fit. But the DWP said it did not expect the total figure to be as high because many claimants are likely to have been out of work with long-term health problems.

Of those whose tests were finished, 91 per cent were capable of some work – 68 per cent fit to work immediately and 23 per cent needing support now, but able to do something in future. Only nine per cent qualified for lifelong maximum ESA support. 

Employment Minister Chris Grayling said: “Programmes developed by the previous government failed to deliver real change for people trapped in benefit dependency.

“The new administration will develop a national work programme designed to transform welfare to work in Britain for all benefit claimants.” Meanwhile, a flagship Labour programme which cost half a billion pounds is branded poor value for money today in a report by the National Audit Office. 

The Daily Express

DISABILITY CENTRE HONOURS VOLUNTEERS

A local disability centre has been celebrating the achievements of its volunteers this week as part of Volunteers' Week, which runs until June 7.

Staff at charity Vitalise's Sandpipers Centre in Southport will award certificates of recognition to volunteers as part of the annual Vitalise Volunteer Awards.

Sandpipers enables disabled people and carers to enjoy short breaks and offers a range of programme of activities and excursions throughout the year.

Among the 25 volunteers currently donating their time at Sandpipers are husband and wife team Kath and Alf Bamping of Bolton, who have been volunteering together at Sandpipers for the past six years.

Kath, 53, said: "The atmosphere is infectious. It's a chance to try new and exciting things and meet new people from all over the world.

"But the icing on the cake is in giving my time for such a great cause and helping others to achieve all the goals. You give, but you get so much back in return.

"You come away feeling tired, saddened at parting company, but already planning when you can come again."
Another Sandpipers volunteer set to receive a certificate is veteran Brenda Dugdale, of Chester, who is still actively volunteering at the age of 84.

Vitalise Sandpipers Centre manager Darren Holloran said: "Volunteers are the lifeblood of Vitalise.

"It's safe to say that without them we simply wouldn't be able to provide such a stimulating experience for our guests.

"That's why we want to recognise our volunteers' commitment here at Sandpipers during National Volunteers Week.

"We want them to know just how much we value their incredible contribution.

"Vitalise runs one of the largest and most diverse volunteer programmes in the UK. Our volunteers are of all ages and from all walks of life, from retired people looking to make good use of their free time, to young people looking to gain valuable skills and experience.

"We regularly welcome long-term overseas volunteers from the four corners of the world."

Vitalise makes more than 5,500 volunteer placements each year. The majority of volunteers spend a week at one of Vitalise's residential centres around the UK, where they provide companionship and support to the disabled guests and carers.

Others accompany visually impaired people on city breaks and activity holidays in the UK and abroad, or help in Vitalise day centres, offices and shops.

Vitalise is a national charity that provides essential services for disabled people, visually impaired people, and carers.

As well as Sandpipers, the charity runs four other accessible centres in the UK, runs day services and organises holidays for visually impaired people. Each of the centres will be honouring their volunteers with awards this week and next. For more information visit www.vitalise.org.uk

Community Newswire

'Right to live' group targets MPs

A new campaign by disability rights activists to limit the right to die launches at Westminster on Thursday.

The campaign - called Not Dead Yet UK Resistance - will be asking MPs to sign a charter in support of its aims.

It says that disabled and terminally ill people should enjoy the same legal protection as everyone else.
Those in favour of assisted suicide argue that opposing assisted suicide will condemn terminally-ill people to suffer needlessly.

The Not Dead Yet UK's charter includes a commitment to oppose any changes to existing laws which state that assisting a patient to commit suicide is illegal.

We do not support assisted suicide where someone who is not terminally ill is helped to end their lives Sarah Wootton, Dignity in Dying

The campaigners claim that the prevailing view is that disabled people's lives are not worth living, and that this contradicts the perception that many disabled people have of themselves.

Their charter also states that disabled and terminally-ill people should have access to the health and social care that they need.

Not Dead Yet UK's convenor, Baroness Campbell of Surbiton, says she fears that cuts in services across the UK will create additional problems for disabled people.

"There have been two attempts to weaken assisted dying legislation in the past four years, with further discussions taking place in the Scottish parliament now," she said.

"We face a bleak situation if calls for assisted suicide to be lawful are renewed whilst vital services are being withdrawn or denied."

Baroness Campbell points out that disabled people need help and support to live, not to die.

"We cannot allow others to speak for us - especially those who seek to offer us the choice of a premature death: it is not a choice, it is to abandon us."

Personal stories
The campaign's launch includes the release of a DVD which documents personal stories of disabled people arguing for the right to live.

The campaign group, Dignity in Dying, says it actually agrees with many of the aims of Not Dead Yet UK.

"We too are concerned about disabled people becoming vulnerable to coercion," said the organisation's chief executive, Sarah Wootton.

"That is why we campaign for a transparent and safeguarded assisted dying law which would allow assisted dying only for terminally ill, mentally competent adults."

Ms Wootton says the law for which her group is campaigning would apply only to disabled people who were terminally ill, mentally competent but suffering unbearably against their wishes.

"We do not support assisted suicide where someone who is not terminally ill is helped to end their life."
Dignity in Dying points out that there is no evidence, from countries where assisted suicide is lawful, to show that there is a negative impact on disabled people.

But the group says that the current situation - which forces people to travel abroad to die - causes unnecessary suffering and is unacceptable.

BBC News

The Disability Equality Duty - have your say!

Get involved in the decisions public authorities make that affect you. The Disability Discrimination Act introduced a new duty - the Disability Equality Duty (DED) - which means that public authorities in the UK will have to actively look at ways of ensuring that disabled people are treated equally.
There is also a specific duty which requires certain public authorities, including all local authorities, schools and health bodies, to produce a Disability Equality Scheme.

To help public authorities involve people with an autism spectrum disorder (ASD), we have produced two sets of guidance. One is for all public authorities and deals with the type of adjustments they should consider to ensure that people with an ASD are involved. The other is specifically for schools. You can download both sets of guidance below.

This is a new and exciting opportunity to influence the decisions people make that impact on your life. If you want to get involved in local decision-making, you may want to contact public authorities in your area to see what they are doing to meet the duty and how you can become involved.

---

• Disability Accessibility Planning (PDF)
  Information about Disability Accessibility Planning for Schools
• Disability Equality Duty (PDF)
  Information about the Disability Equality Duty for Schools
• Involving people with autism - a guide for public authorities (PDF)
  To request more copies of this guide, please email campaigns@nas.org.uk

National Autistic Society 

Mental health research is 'incredibly underfunded'

VIEWPOINT
Professor Til Wykes
Institute of Psychiatry, King's College London 

 

Poor mental health affects 16.7 million people in the UK today.

In this week's Scrubbing Up, clinical psychologist Professor Til Wykes says strategies for funding research into mental health need to be overhauled.

Patients and their families deserve better, she says.

When it comes to thinking about mental health, I'd like to believe we've come a long way from the Victorian stereotypes of hysterical women and crazed madmen languishing in Bedlam.

But while physical diseases like cancer are managing to throw off the stigma they carried in previous centuries, mental illnesses are still too often ignored or misunderstood.

Not only does this lead to prejudice and discrimination, it also seems to make it harder to find funding for research into the causes of, and treatments for, mental ill health.

Improving care and treatment for people with mental health problems requires the same rigorous research as demanded for tackling physical illness.

However, despite the huge burden that poor mental health represents to society - from the disabling effects on individuals and their families, to the financial costs of dealing with mental illness - mental health research is incredibly underfunded.

In these austere times, it is worth bearing in mind that in England alone mental health issues cost us £77bn a year

Only 5% of medical research in the UK is into mental health, despite 15% of disability resulting from disease being due to mental illness.

It's estimated that one in four of us - 15 million people of all ages in the UK - will experience a mental health problem this year.

That's substantially more people than will have a heart attack or a stroke, and yet twice as much research goes into heart disease and stroke than is carried out in mental health.

It's more people than will be diagnosed with cancer this year, and yet cancer gets more than 25% of medical research funding - five times as much as mental health.

In these austere times, it is also worth bearing in mind that in England alone mental health issues cost us £77bn a year.

If we had a better understanding of mental health and better treatments for specific conditions, it would go a significant way to easing the nation's financial situation, as well as our states of mind.

Last week, one of the major research funders, the Medical Research Council, published one of the most up to date reviews of the strengths and challenges of mental health research in the UK.

It not only showed that the research that does get funded is world-class but that the UK is well-placed to lead the way in this area.

The review concludes that there are several opportunities to fund more research in the UK that would help accelerate progress in developing new treatments, or lead to better ways of preventing mental illness in the first place.

It means we have to set priorities. We have to direct the funding that is available into the research most likely to help.

But (and there always is a but) it sets the bar high in terms of funding decisions over the next few years and challenges the UK to really pull its weight in this much needed research arena.

Mental health problems frequently start in childhood and persist throughout the rest of a person's life. Finding better ways to treat - or preferably prevent - poor mental health as early as possible will bring enormous benefits to individuals, their families and society as a whole.

We simply can't afford to ignore this problem any longer.

BBC News