LETS TREAT DISABLED PEOPLE THE SAME AS ABLE BODIED PEOPLE

Disabled people would like to be treated like any normal person.
How can this be achieved as i know people discriminate against disabled people i do not like these people.
These people talk to the carer, instead of the person with the disability.
Do they fear being with the disabled person or are they just ignorant.
What are your views have you been treated by this sort of abuse.
if you have any opinions on this matter my address is damianplant@homecall.co.uk

the more feedback the better all opinions will be replied to.

Damien Plant's Weblog, 28th February 2009

Bus station move just the ticket for Morpeth charity

A Morpeth charity which has been helping disabled people for 20 years has moved to new headquarters in the Sanderson Arcade development.

The Castle Morpeth Disability Association is the first organisation to move to the brand new purpose built offices based at the bus station which has also just opened.

The charity was started by a dedicated team of volunteers and now has eight staff offering a range of services as well as supporting community initiatives.

Covering an area across mid and North Northumberland, the team at CMDA is hoping the new move will raise its profile.

The new premises are larger with better facilities covering 1,820 sq ft on the ground floor with good access.

The bus station has been built as part of the £32m development currently under construction. There are also public toilets and a Martins Newsagents.

This phase of the town centre development has been completed on schedule and will be officially opened in a special ceremony being held on March 5.

Director of Castle Morpeth Disability Association, David Weatherhead, said: "The move has gone really well and we are hoping we will have a much higher profile in our new premises. It puts us in a better position to do more training and support other groups in the area.

"It is great to have premises and facilities which will help us to move the charity on to the next level. We are in a great location in the town and easily accessible by car and bus."

Director of Morpeth II, the developers of Sanderson Arcade, Mark Dransfield said: "We hope the new headquarters will help the charity build on the great work it does in Morpeth.

"It's exciting for everyone involved in the project to start seeing people moving in to this first phase of the development."

For further information about Castle Morpeth Disability Association visit the website at www.cmda.org.uk

The offices are next to Stand B in the new Morpeth Bus Interchange. CMDA can be contacted on 01670 504488.

Morpeth Herald, 27th February 2009

'Ivan's death was tragic. His life was not'

Dea Birkett

The now iconic images of David Cameron and his son have done much to alter perceptions of disability. Here, a mother of a disabled child hopes real change may follow

Ivan Cameron was, in many ways, a very powerful child. We know of the profound effect he had on those he lived with, in particular his father David Cameron. But he has changed more than his family. The Cameron family Christmas card - a photo of parents and three children at home - has been reproduced many times in the past year, frequently with the non-disabled children cropped out. The black and white image of father and son gazing at each other has become iconic. I cannot recall seeing another photo of a parent lovingly holding a disabled child that wasn't being used to raise money for charity. Six-year-old Ivan, unable to speak, had a huge voice. He only had to be taken for a walk in his buggy to be making a statement. Each small, everyday thing he did challenged perceptions. When people looked at pictures of Ivan they simply saw a child who was loved by his family, and loved them in return.

His death this week has widely and rightly been reported as tragic. But his life was not a tragedy. It is important to remember that, for most disabled children and their families, what makes a life tragic is not the disability itself, but the constant struggle to get the services and support one needs.

I keep this particular tragedy before me every day. I have a small piece of paper pinned up above my desk. It has a date written on it: 12 December 2004. It is the date on which I first applied to our local health authority for a wheelchair for my daughter, who cannot walk. After appeals, reports, independent reviews, and arguments, she now has her new wheelchair. It arrived last year.

This note is to remind me that it's always worth fighting, even if it takes almost three years to achieve the simplest task. But it also reminds me that there's always a fight. I could have written on this note, "It might sometimes feel like it - but you are not alone!" There are 770,000 other disabled children in Britain, all fighting, all with seminal dates when each struggle began. When the Every Disabled Child Matters (EDCM) campaign balloted families on what one thing would change their life most, the outright winner was "Not to have to fight for support."

That got Kay O'Shaughnessy's vote. "Life is relentless," she says. "It's physically and mentally punishing. But the biggest frustration is the constant battle that you have with social services, health and education to get any kind of support or help."

O'Shaughnessy's daughter Amy, 11, has cerebral palsy and uses a wheelchair. "Getting her posture right is the key to her quality of life," says her mother, "but the biggest battle for us is getting a decent seating system for her. I've had to take up formal complaints. It's been going on since she was two.

"We eventually sourced a seating system ourselves. They then agreed to pay for the frame of the wheelchair, but not the seat. What was I supposed to do? Plonk her straight on the frame?"

Even when there are services, attitudes can be as big a hurdle as any flight of steps. When your child is diagnosed with a disability, every medical person you meet - from the midwife to the consultant paediatrician - will shake their head and say they're so very sorry. This is a disabled baby's entrance to the world. If they weren't disabled, they'd be greeted by cooing and smiles.

This is the first sign that, as the parent of a disabled child, you enter a strange parallel universe. Even all the Cameron's privilege couldn't protect them from this.

I remember one parent of a child who had recently been diagnosed with a disability saying to me, "One day I was pushing my trolley around Toys R Us. The next, it was as if I shouldn't be there. I'd been sent to another place."

In this special place, everyday things - like playing in the park, boarding a bus, going on a school trip - become skirmishes in the war. Imagine the uproar if, indiscriminately, a group of children were picked upon and told they would be routinely excluded from these ordinary childhood activities. Yet my daughter was once banned from joining her class for lessons at the local swimming pool because she couldn't walk, and the pool manager therefore decided she was a health and safety hazard. Ironically, she can swim. One of her few forms of physical exercise was denied her.

It's not only practical services, but access to leisure facilities and social life that families have to fight for. In the EDCM campaign survey of the one thing that would change their life, it was "something to do" that came out top with the children. Lorraine Hockey's daughter Kassie has Rett syndrome, uses a wheelchair and cannot talk. Hockey considers herself lucky to be in one of the 6% of families who receive support for carers (as were the Camerons themselves). But meeting basic care needs is not a life. "She's a bright teenager who likes do things for herself," says Hockey. "But we struggle to find things she can do socially. Until last year she went to the local kids' club. But now she's 16, they've thrown her out because they say it's not age-appropriate. She's been banned from going there. She's lost her club that she loved going to. She doesn't want Mum and Dad around her all the time. She wants other teenagers. We're absolutely desperate."

Provision is getting better. Just this month, the new child health strategy announced that Primary Care Trusts have £340m for disabled children's services, including for wheelchairs. This followed on from the £430m promised for services under the Aiming High for Disabled Children programme. But it's the responsibility of the trusts to spend the recent money appropriately; it isn't ringfenced, so the fear is that it will sucked up by more immediately pressing and popular concerns. "Who's going to make sure that PCTs spend it on disabled children?" says Christine Lenehan, director of the Council for Disabled Children and a board member of the EDCM campaign. "We have high-level government commitment and cross-party support. But are we going to make a difference on the ground? Disabled children remain a marginal group and there are many competing priorities. Every point of the delivery change must believe that disabled children are their responsibility and matter. That's still a big challenge."

Families, including mine, have become cynical. We've been made promises before. Just a few years ago, we were told that every family with a disabled child should have a "key worker" to prevent us having to spend so much of our time explaining the same thing to different people. "You're continually repeating your story," says Anna Gill, whose 17-year-old son Jamie has a degenerative metabolic condition. "If you open your heart and talk to someone from health, education is never told. Repeating your story is very hard. I had to repeat our story with every new person - Jamie's progress from when he was born, all the crises in his life, all of the hardships - we just keep repeating. You're constantly having to say what your child can't do. It makes you feel that you're reinforcing failure over and over again. You have to develop a third skin. But why should you?"

We've also lost count of the number of times we've had to spell "spastic quadriplegia" while someone wrote it down on their form. It was always for their own purposes, not ours, as this crude diagnosis says little about what we actually need. One parent kept a record of her daughter's appointments over her first seven years. Her daughter had 745 more appointments than her non-disabled brother. The mother had driven 11,004 miles to get her to them, spending 4,942 hours at the appointments themselves.

The key worker scheme was designed to tackle this blatant absurdity, which not only wastes families' time but government money. A pilot scheme was tested and found to be effective. Appointments were significantly reduced, parents could return to work. But no more key workers appeared. The scheme, like so many others, was dropped.

Multiple appointments aren't the only way in which a family's life can be devoured by the demands authorities - not the children themselves - make on them. To apply for appropriate benefits, you have to fill out 10 different forms containing 1,194 questions, spread out over 319 pages. Many families rely on these benefits, as regular employment when you have a disabled child is made practically impossible by the multiplicity of appointments. It's also extremely difficult to find childcare. I couldn't use a childminder for my daughter, as she needed a fully accessible home. I had to go for the more expensive option of employing a nanny. Childcare is estimated to cost families five times as much for a disabled child as a non-disabled child. A Save the Children report found that families with disabled children need up to 18% more income than similar families without disabled children to secure the same standard of living. Reaching this goal is impossible for most. Only 16% of mothers with disabled children do paid work, compared to 61% of other mothers.

Many of the constant questions and repetitive appointments aren't only costly and time-consuming, but intrusive, asking about your family's sleeping habits and toilet needs. Tara Flood, chief executive officer of the Alliance for Inclusive Education and a Paralympic gold medallist describes it as having "shared ownership" of your child, as if they weren't really your child anymore but partly belonged to the very systems you're battling against. "You have to open up your family to huge amounts of scrutiny, especially if your child has high levels of support need. Other families don't have to go through this. That private, personal life is ripped away," says Flood.

At one stage, when I was giving up on ever getting my daughter's wheelchair from the health authority, I applied to a charity for support. The form they sent back requested detailed financial information, such as our monthly electricity and gas bills, and how much we spent each week on food for the family. I sent back the form, filling in estimated amounts for our utility bills and for our fortnightly shop at the supermarket. The charity wrote back saying they needed copies of the actual bills, including the receipts from Sainsbury's. I phoned them to explain that I felt submitting my shopping bills was invasive. It wasn't the charity's business whether I spent my money on Hellman's mayonnaise or Heinz salad cream, or which brand of deodorant I bought and how much. I refused to send them our itemised bills. So they refused to accept our application. The struggle with the local health authority resumed.

For my daughter, now 16, intrusions and struggles are a way of life. She has faced obstacles since she was born, forcing her, through no choice of her own, to be far stronger than her two siblings. While other children can afford to be silent, knowing their needs will be met, she has had to speak out and up. Her difference makes her visible; it's impossible to ignore her. It should also impossible to ignore the powerful voice of Ivan Cameron.

"I don't want the agenda to now be that a disabled child might die young or that a disabled child is a burden on the family," says Tara Flood. "I want the item to be - this is a time for us to think differently about what it is to have a disabled child. It is bloody hard - but why is it hard? Is it because the support for families is near non-existent? It shouldn't be a struggle, no more than any other child. That's the shift that has to happen. Then there wouldn't be any more tragedies."

• You can sign up to the Every Disabled Child Matters Campaign at edcm.org.uk. Contact a Family (cafamily.org.uk) provides support and advice for families with disabled children. The Family Fund (familyfundextra.org.uk) has launched a free-to-join buying club offering discounts on goods and services

The Guardian, 28th February 2009

Plan to move disabled people 'deplorable'

We are going back to the dark ages, says chairman of council's advisory group

Aberdeen City Council's plans to relocate older people suffering from learning disabilities came under renewed attack last night.

Alastair Williamson, chairman of the council's own disability advisory group, denounced reviews allegedly intended to decide whether the disabled people should remain in special units or be transferred to old people's homes as "deplorable".

He was reacting to fears sparked by a letter from the council to relatives informing them reviews would be carried out to see if those with learning difficulties aged over 65 could be moved to old people's accommodation to secure "best value".

Mr Williamson, of Gilcomstoun Court, said: "We are going back into the dark ages.

"I was always led to believe disabled people should be given the best possible quality of life, but moving someone with multiple sclerosis into accommodation which has not been adapted for them is absolutely diabolical."

He added: "They want to hide them away and pretend they don't exist in homes where they will never be seen."

Earlier Aberdeen South Labour MP Anne Begg denied a charge that she had been "scaremongering" in raising concerns about a policy she claimed meant "people with learning disabilities who are over 65 are to be ripped out of their homes in order to save money".

The attack on her came from Bridge of Don Liberal Democrat Councillor Gordon Leslie, the lead councillor on social work issues, who later stood by his remarks.

A council spokesman later sought to calm fears about the policy, insisting that many who have been subject to the reviews have not been moved.

The intention was to ensure people were in the accommodation best suited to their needs, he said.

It was not to do with saving money.

Miss Begg said councillor Leslie's remarks made her "even more worried".

She said: "Councillor Leslie accuses me of 'scaremongering' but then goes on to confirm that the council are doing exactly what I had dreaded they were."

The Press and Journal, 25the February 2009

MSPs to pass disabled parking law

Legislation which would see people fined for wrongly parking in disabled bays is expected to be passed by MSPs.

The plans were brought to the Scottish Parliament by Labour MSP for Dumbarton, Jackie Baillie, who said the rules needed to be tightened.

Currently, 85% of disabled parking bays are not legally enforceable.

The Disabled Persons' Parking Places Bill would see anyone using a disabled parking place without a blue badge fined up to £60.

Ms Baillie said the change would make it easier for councils to designate bays as disabled.

The proposals would also require local authorities to work with the owners and operators of private car parks - such as supermarkets and out of town shopping centres - to negotiate an agreement to make disabled parking places in these car parks enforceable.

Holyrood's local government committee earlier heard concerns from councils about the paperwork, costs and time it would take to implement the new law - but it concluded there was a need to clamp down on the abuse of disabled parking spaces

---

This article is from the BBC News website. © British Broadcasting Corporation

WP REMIX, 25th February 2009

Improvements underway in Rossendale for disabled motorists

A MAJOR scheme to improve facilities for disabled people in Rossendale has been welcomed by campaigners.

Rossendale has previously been criticised for its lack of disabled parking spaces and the number of inconsiderate drivers who park in them.

But the council has started revamp of parking facilities which will see the introduction of new disabled bays as well as dropped kerbs and handrails.

The council is also promising to prosecute motorists who ignore the restrictions and park in the bays.

Helen Smith, from the disabled motorists' charity Mobilise, said: "I am pleased that the council is planning to increase the number of disabled bays in the borough.

"The problem of finding an accessible bay is something our members find a real problem especially since so many spaces are abused by inconsiderate motorists.

"I'm therefore reassured that the council will be penalising motorists who selfishly ignore the disabled parking bay restrictions."

New disabled parking bays will be installed in car parks across the borough including, Bacup Baths and Fern Street, Burnley Road car park, Crawshawbooth, North Street and Market Street car parks, Whitworth, and numerous car parks in Haslingden and Rawtenstall.

Dropped kerbs will also be installed at the Coal Hey Street Car Park in Haslingden and the Fern Street Car Park in Bacup.

Rossendale council leader, coun Tony Swain, said: "Disabled people often struggle to find a suitable parking space.

"We have listened to what disabled people have said and identified car parks where the number of disabled bays can be increased.

"Not only that but we are also putting other adaptations in place such as dropped curbs and handrails to make life easier for them."

Traffic and parking manager, Lucy Kershaw, added: ""In order for our civil enforcement officers to ensure that disabled bays are not being misused, we will need to put signage up at some of the car parks in the next month."

The work is part of a £150,000 five-year scheme to improve parking facilities.

Lanashire Telegraph, 25th February 2009

RYA SAILABILITY TO LAUNCH NEW 'BEGINNER TO WINNER' PROGRAMME

RYA Sailability, the charity of the Royal Yachting Association which provides disabled people with access to sailing activities, will be launching its brand new 'Beginner to Winner' Sailability and Paralympic programme at the RYA Volvo Dinghy Show 2009.

Thanks to funding from Sport England and Skandia Sailing Club the new programme will offer a clearer development pathway for disabled sailors looking to get involved in sailing and racing right through to potentially training for the Paralympics.

Debbie Blachford, RYA Sailability manager said: "We have introduced this new 'Beginner to Winner' programme so we have a more transparent system for disabled sailors who want to get involved in racing. The sailors will be able to see where they are with their racing, where they can go and we have a better way of identifying and developing talent for the future, through the racing programmes of the RYA."

The new programme will also be enhancing the training given to coaches of disabled sailors and coaches who are disabled themselves to ensure the best standard of training is being given to all the sailors.

"It will now be a lot easier for disabled sailors to get involved in competitive racing and allow us to identify and fast track talented sailors in to the Skandia Team GBR training programmes", concluded Debbie.

Join as at the launch to find out more.

Sailing is a great sport whatever your disability and the Sailability scheme makes it even easier for disabled people to get sailing. There are over 100 Sailability sites over the UK; to find details of your local site visit www.rya.org.uk/sailability or call 0845 345 04 03.

The launch of Sailability's 'Beginner to Winner' programme is just one of the many activities taking place at this year's RYA Volvo Dinghy Show 2009, in association with Yachts & Yachting and Suzuki, at Alexandra Palace, London 7^th – 8^th March.

Visit the website to find out more about what's on and to book your tickets; visit www.dinghyshow.org.uk or call the ticket hotline on 0845 345 0424. By pre-booking your tickets you will be entered in to a free prize draw to win a fabulous RS-Tera dinghy, courtesy of LDC Racing Sailboats.

BoatsandOutboards.co.uk, 24th February 2009

Daylight Club for the Disabled gets wheel-chair accessible minibus

A day club for disabled people is celebrating the arrival of its new £35,000 minibus.

The Daylight Club for the Disabled, which provides a centre for disabled residents, has been raising funds for the past two years.

Salpi Gulbekian, co-ordinator of the club, told the Review that its old bus was coming to the end of its life and they desperately needed a wheelchair-accessible one for to accommodate members.

She said: "A lot of people end up being isolated on their own and they rely on the bus to pick them up to them to the centre."

The club meet twice a week, on Wednesdays at St Johns Church Hall, Harpenden, and on Fridays at Christchurch in St Albans.

Kristina Vandyke, 48, of Jodies Court, said: "It's changed my life around completely.

"I used to be housebound. I was stuck in the house 24/7.

"Since I have come here, I have started doing volunteer work.

"I have had the chance to meet more people, go to new places and it's just brilliant.

"It has totally helped me to get back on my feet."

The Daylight Club held many fundraising events to raise the money, with £10,000 donated from Hertfordshire County Council, and £5,000 from the Harpenden Trust.

Salpi said the club is always looking for volunteers, and new members are always welcome.

If you are interested in joining or helping out, you can call Salpi on 01727 827667, or email salpi@leisureconnection.co.uk

St Albans & Harpenden Review, 25th February 2009

Project is helping disabled young people into work

A SPECIALIST recruitment branch in Worcester has been invited to provide candidates for a prestigious European mentoring project to help young people with disabilities get into work.

Remploy has been asked to help with the Validating Mentoring 2 (VM2) project, which is run by six international partners, including the University of Worcester.

Project officer Charlie Wise said: "The project's focus is to enhance the employability skills of young people with disabilities through mentoring, so they are better placed to secure employment. It helps candidates develop realistic and relevant insights into the world of work and enhances their abilities to meet everyday life and work challenges."

Remploy, the UK's leading provider of employment services for people with disabilities and health conditions, delivers the Government's Pathways to Work programme in Worcestershire.

Its branch at the Butts in Worcester provides a range of specialist services and advice to support people off incapacity benefit and into employment.

Pathways to Work district manager Sharon Withe said: "We see this as a valuable extension of the branch's services. Compared with their peers, disabled people can often lack formal qualifications which has obvious effects on their employability.

"Through our collaboration with the university and this programme our mentees can benefit from the advice and real-life experiences of local business leaders."

Volunteer mentors are recruited and trained by the university and seven mentoring relationships have already been established with Remploy clients.

Dr Val Chapman, project director at the University of Worcester, said: "VM2 is funded by the Leonardo da Vinci programme of the European Commission.

"The project ends in September this year.

"If proven successful, it could potentially be used as a blueprint for a new mentoring scheme to be run in conjunction with Remploy and Herefordshire and Worcestershire Chamber of Commerce."

Worcester News, 25th February 2009

Bus passes for carers will now cost £10 (Isle of Thanet)

The isle's carers are set to be hit in the pocket by new charges that have been blasted as "despicable".

Bus passes which were previously free to carers who accompany those with disabilities for travelling will now cost £10 each year if proposals to levy the charges are given the go ahead.

The charges would raise the council about £1,000 a year, according to official documents.

It means that 100 people who help disabled people to travel or who accompany them on outings could be affected.

The move has been branded despicable by Phien O'Reactigan, the chairman of the year old Thanet Disability Forum, who said: "Thanet council seem to have very low priority of what can be done for disabled people and his is indicative of that. It's penny-pinching.

"There are many other places where the council can make savings and they shouldn't be punishing the disabled people in the community and their carers."

He added: "This is an example of the council looking to raise money via the most vulnerable people in the community – to my mind it's a despicable act. They should save money by cutting down on their junkets or buffets."

Roy Nicholls, publisher of the forum newsletter, added: "It's just another expense for people who can ill-afford it."

A majority decision will carry the vote when the budget comes up in April.

Labour group leader Richard Nicholson said: "I hope it doesn't go through, but it looks likely that it will. It's to raise money, there's no other way of putting it, really. The estimated income is £1,000, which means 100 people who get bus passes to escort disabled people will have to pay out of their own pocket, or the disabled may buy it in some cases. It's a moral issue – there are other things that could be done or they could save some money."

The council's cabinet member for finance and economy Cllr Martin Wise defended the decision.

He said: "The bus permit scheme allows for free local bus travel for all pensioners and certain disabled people. The issue of companion travel is not covered because the Government feeling is that severely disabled customersreceive additional financial help through the Carers Allowance, Disability Living Allowance etc. We operate an additional discretionary scheme whereby if a medical professional certified that a customer was medically unable to travel alone at all times, then the companion could also travel for free. The council meets the cost of the journeys made by the companion, whereas the travel for the disabled customer is met by central government grant. This particular area of permits has grown substantially in recent years, which was funded by the council taxpayer. It was decided it was fair to request a contribution to the cost of the companion's travel, bearing in mind the scheme is discretionary and the travel costs are paid to the disabled customer through other means."

Your Thanet, 25th February 2009

Editor's Comment: Ivan Cameron

Really sad news yesterday about the passing of Ivan and my thoughts and prayers go out to the Cameron family at this time. It is, and has been said a lot, a devastating thing when a child dies - even if its kind of expected.

As an adult with a less severe degree of Cerebral Palsy, I can recall the anguish of my own parents as they had to live with the expectation of a shortened life for me. As things have turned out, despite living with a major illness since my late twenties. I have now out lived my Mother and I expect to outlive my father too, who is now struggling with old age.

My point is this (and I think its important to say) that, while there are many children in the UK with complex disabilities, a significant number will grow up into adulthood and with the right support and love from the community in which they live and the support of the government which they will have the right to vote for, can go on to have a good quality of life and contribute to the rich diversity of this world.

I'm very mindful that perhaps for some parents of a disabled child Ivan's passing has brought a keener sense of anguish for there own particular circumstance. And I would encourage anyone reading this entry, if you know of a parent in that position just offer them your support.

It may be something as simple as offering them a cup of tea and an opportunity to talk, or perhaps something more involved like, if possible, taking their child to the park for an hour so they can get a break.

I think bringing up a child with any sort of long-term illness or disability is the hardest job in world. For some parents it can be a most isolating and lonely experience and they need all the support they can get from those around them.

Buts let's also remember too that though there is anguish and heartbreak, the courage of children like Ivan does bring joy and makes the human race just a little more humane. Don't you think?

George, editor

Cameron's eldest son Ivan dies

Conservative leader David Cameron's eldest son Ivan has died in hospital.

The six-year-old, who had cerebral palsy and epilepsy, became ill overnight and died at St Mary's Hospital in Paddington, London.

Mr Cameron, who described Ivan as "wonderful", and wife Samantha have two younger children, Nancy and Arthur.

Prime Ministers' Questions, which Mr Cameron had been due to attend at noon, was called off at Prime Minister Gordon Brown's suggestion.

In place of the normal clashes between MPs and the prime minister, Mr Brown expressed his condolences to the Camerons on behalf of the whole House and country.

I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love Prime Minister Gordon Brown

Shadow Foreign Secretary William Hague, standing in for Mr Cameron, thanked Mr Brown "on behalf of David and his family" for his "heartfelt words".

Deputy Lib Dem leader Vince Cable, who is standing in for Nick Clegg, also expressed his condolences in a short statement.

Commons Speaker Michael Martin then suspended the sitting until 1230 GMT "as a mark of respect to Ivan".

Mr Cameron had also been expected to join Mr Brown and Baroness Thatcher at 10 Downing Street later for the unveiling of a new portrait of her, but this event has also been called off.

'Saddened'

Announcing Ivan's death earlier, a Conservative Party statement said: "It is with great sadness that David and Samantha Cameron must confirm the death of their six-year-old son Ivan.

"Ivan, who suffered from cerebral palsy and severe epilepsy, was taken ill overnight and died at St Mary's Hospital, Paddington, early this morning.

"David and Samantha would ask that their privacy is respected at this terribly difficult time."

Prime Minister Gordon Brown said he and his wife Sarah were "very saddened" about Ivan's death.

In a statement, Mr Brown said: "We have sent our condolences to David and Samantha. The death of a child is a loss no parent should have to bear.

David Cameron was with Ivan when he met the Archbishop of York on Christmas day

"I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love.

"The thoughts and prayers of the whole country are with David, Samantha and their family."

Mr Brown and wife Sarah lost a daughter, Jennifer Jane, in 2002, who was 10 days old when she died in hospital in Edinburgh.

Mr Cameron, who has been leader of the UK's official opposition since 2005, had been an MP for Witney, in Oxfordshire, for less than a year when Ivan was born in April 2002.

He suffered from Ohtahara syndrome, a very rare form of epilepsy characterised by spasms which start in the first days of life. Some children can suffer as many as 100 seizures everyday.

Describing the moment when he learned of Ivan's disabilities, Mr Cameron told the Sunday Times in 2005: "The news hits you like a freight train.

"You are depressed for a while because you are grieving for the difference between your hopes and the reality. But then you get over that, because he's wonderful."

NHS praise

The BBC's political editor Nick Robinson said Mr Cameron's experience of looking after Ivan, who needed round-the-clock supervision, had shaped Mr Cameron's character and his attitude to the NHS.

Friends have previously attributed Mr Cameron's "modernising" leadership of the Conservatives to the NHS care Ivan received.

Ivan Cameron with Samantha Cameron

The illness has also helped the Tory leader realise that there is more to life than politics, they have said.

In a 2007 speech, Mr Cameron said: "I help care for a severely disabled child - my son.

"It's what I do at the start of each day. It's sharpened my focus on the world of care assessments, eligibility criteria, disability living allowance, respite breaks, OTs, SENCOs, and other sets of initials.

"But I would not dare to call myself a carer. The work that full-time carers or those with little extra help do is unbelievable."

London Mayor Boris Johnson, an old school friend of Mr Cameron, said: "I was shocked at the terrible news this morning of the death of Ivan Cameron. My deepest sympathies are with David, Samantha, Nancy and Arthur."

Senior Conservatives in Oxfordshire, where Mr Cameron's Witney constituency is located, also expressed deep sympathy for the Camerons.

Keith Mitchell, leader of Oxfordshire County Council, said: "David and Samantha have been inspirational in their care and support for Ivan. This will be a very sad blow for them both."

Shadow Foreign Secretary William Hague will stand in for Mr Cameron as Conservative leader while he takes time off, it is understood.

BBC, 25th February 2009

Primary Video from Sky News via YouTube

How dare they suggest disability is scary!

I've heard it all now, I already knew that there were many ignorant people out there, but this takes the biscuit.

On Cbeebies there is a new presenter, she's a pretty girl, bubbly, good at her job, but dare I say it…she has a disability, she only has one hand. I have to say, I didn't even notice at first, and I expect most kids didn't…but parents actually started making complaints, hundreds of them flooded in apparently.

What a joke!

Some insensitive 'idiot' (for want of a better word) actually said… "Is it just me, or does anyone else think the new woman presenter on Cbeebies (Cerrie Burnell) may scare the kids because of her disability?

"I didn't want to let my children watch the filler bits on the bedtime hour last night because I know it would have played on my eldest daughter's mind and possibly caused sleep problems... and yes, this is a serious post."

Amazing! and sadly..no, it wasn't just him!

I truly cannot believe that so many people would discriminate so freely, perhaps if he was more sensitive, his kids would be too. Kids really don't care about disabilities, until they are taught to do so, they may be curious, which is natural, but scared…I doubt it very much???

Other people accused the BBC of employing her to score points, actually accused the BBC of positive discrimination can someone explain this term to me please?

Cerrie Burnell rose above it, and even though she was said to be disappointed by the criticism she still welcomed the discussion…

"It can only be a good thing that parents are using me as a chance to talk disability with their children," she said.

"It just goes to show how important it is to have positive disabled role models on CBeebies and television in general."

Good for her.

This young lady has a child herself, is her child going to grow up frightened…NO! Because her child will be brought up in a household where differences make no difference to what a person can achieve.

 

Sally's World, 24th February 2009

Southport benefits cheat filmed driving forklift truck at scrapyard is jailed

James Smith in black and red shirt directing staff inside the compound of Mr Smiths Scrap Yard in Chorley.

A CONMAN who swindled nearly £35,000 in benefits by claiming he could barely walk was captured on camera running a scrapyard.

For nearly eight years James Smith, 48, said he need full-time care because of a disabled leg and an enlarged heart.

But Liverpool crown court heard in 2006 he took over the running of his dad's Chorley scrapyard. Undercover officers videoed him driving a forklift truck and pushing cars around.

Jailing him for 10 months, Judge Nigel Gilmour QC said he had "pulled the wool" over his GP's eyes.

He told Smith: "You need punishment to deter you and to deter others who abuse the benefits system."

Prosecutor Nicola Daley said Smith had been receiving the highest rate of disability living allowance because he had claimed he was incapable of caring for himself.

In 2005, he filled in a form saying he was breathless even sitting down, struggled to get out of a chair and couldn't walk more then 20 metres. But following a tip-off, investigators placed Smith under surveillance. Miss Daley said: "The defendant was seen going to the scrapyard, driving heavy vehicles, moving items around there and not really having any real difficulties."

Smith, of Shaws Road, Birkdale, also claimed housing benefit and council tax despite living in a Southport home owned by his dad.

He admitted one charge of dishonestly making false representations and two of dishonestly failing to notify a change of circumstances between August 2004 and January 2008, making a total overpayment of £34,711.

His barrister Desmond Lennon said Smith had suffered a severe leg injury and was still not in the best of health.

A DWP spokesman said: "A lot of people are dependant on society security benefits. We have a duty to make sure benefits are given to the right people."

Liverpool Echo, 24th February 2009 

TV presenter victim of disability hate campaign

Prejudice against disabled people is seldom "up there" with race and gender bias but the case of Cerrie Burnell shows that it should be.

------------------------

Burnell was born with the lower part of her right arm missing and is a presenter on the CBeebies children's TV channel.

Cue complaints and vitriol from parents who are demanding that Burnell be taken off the screens - in other words, sacked - because her disability may be scaring the young viewers.

The comments appeared on the Grown-ups section of the CBeebies website but now have been deleted. Indeed, this morning the Cerrie Burnell thread was out of action - so even those who wished to show their support for the presenter could not do so.

However, a blogger on disability matters, Same Difference, has accessed the deleted remarks and the comments are truly shocking. One talks of banning his daughter from watching the channel because he feared the sight of Burnell would give her nightmares.

Another talked of the BBC's "scary" determination to show "minorities at every opportunity". And there was the inevitable gripe about "positive discrimination". All we needed was a comment about political correctness going mad and we would have had the full set of clichés borne of bigotry.

One can only speculate the sort of attitudes these parents are instilling into their children.

What, I wonder, was their reaction to the disabled characters, Creature Discomforts, developed by the Wallace and Gromit team and supported by Leonard Cheshire Disability. Perhaps they met with approval because they inhabited a fantasy world.

Well, in the real world it is people, not animated sausage dogs, who have disabilities. And the earlier children see people with disabilities in real-life situations the quicker they will be accepting of disabled people in mainstream life. 

Shame on the parents; and, importantly, let us hope that Burnell can continue with her career.

Outside Left, 24th February 2009

Landmark Victory For Autism Campaigners

The National Autistic Society (NAS) is, today, celebrating a crucial win for the half a million children and adults with autism in the UK. In response to political pressure from Cheryl Gillan MP's Autism Bill, the Government announced a new raft of measures that when fully implemented could help to address the shocking lack of autism services which leaves people affected by the condition feeling isolated, ignored and often at breaking point.

Cheryl Gillan MP said; "It was critically important to me that my Private Members' Bill should cover an area that ordinarily would be overlooked -today's announcement is a testament to the weight of support from my colleagues and autism campaigners. Without the right help autism can have a profound and sometimes devastating effect, so I will keep campaigning until I hear the Government pledge to fully support people affected by autism in Parliament. The real test will be in how they implement this package of measures in the long term."

Mark Lever, Chief Executive of the NAS said; "The failure of many local authorities to recognise the needs of people with autism made it absolutely necessary to try and create an autism law. Today, thanks to the overwhelming level of support galvanised by Cheryl Gillan MP's Autism Bill from our campaigners, across all the political parties and the 15 other autism charities we have been working with; we have achieved our major political goals. This is a landmark victory which could also have a far wider reaching impact on others in the disabled community. We warmly welcome the announcement and look forward to hearing the Government categorically reaffirm their commitment to transforming the lives of people affected by autism when the bill is debated in Parliament on the 27th February."

Proposals announced by the Government respond to demands made by Cheryl Gillan's Autism Bill which will, when fully introduced, hold local authorities legally accountable if they do not provide appropriate support for children and adults with autism.

Mark Lever added; "The NAS would like to thank Cheryl Gillan MP, the 6,000 people who emailed their MP and all the MPs who pledged their support for the bill."

Measures outlined should :

Improve local information on the number of children and adults with autism and ensure effect transition to adult services

The majority of local authorities do not have a clear idea of the numbers of people with autism in their area, which therefore means their needs are excluded in the planning and commissioning of services. The Government's proposed amendments to the regulations for Children and Young People's Plans will legally require local authorities to collate and share data and information on disabled children with other agencies. This could see a huge sea change in the way the needs of children with disabilities, including autism, are recognised and met and ensure that there are services in place to help them reach their potential in adulthood. 40% of adults with autism currently live at home with their parents and are heavily reliant on them for support.

Tackle the chronic lack of support for adults with autism

Research for the NAS I Exist campaign found that at least 1 in 3 adults with autism are experiencing mental health difficulties due to a lack of support. In response the Government committed to publishing a national adult autism strategy later this year. In a crucial development, as of today, this will now also place legal duties (subject to the necessary consultation process) on local authorities to address the barriers to support faced by adults with autism. The way in which adults with autism receive services at ground level could also be dramatically improved as there should be regional and local leadership in place to deliver the strategy. The Government will also work to ensure that Joint Strategic Needs Assessments (the main tool commissioners use to inform service planning and commissioning strategies) cover autism.

- Cheryl Gillan's Autism Bill is backed by The National Autistic Society, Wirral Autistic Society, Autism Research Centre, TreeHouse, Hampshire Autistic Society, Staffordshire Adults Autistic Society, Research Autism, Autism Anglia, The Wessex Autistic Society, Autism Education Trust, Autism Speaks, Autism West Midlands, Autism in Mind, Autism Initiatives, Sussex Autistic Community Trust and Tyne and Wear Autistic Society.

- In 2008, the Government committed to a national adult autism strategy which will look at four key areas: health, social inclusion, choice and control and training. Mark Lever, the Chief Executive of The National Autistic Society is chair of the strategy's external reference group.

- Statistics are taken from the NAS I Exist campaign. Launched on 5th February, 2008, it aims to improve the lives of the many thousands of adults with autism who are isolated and ignored. Most are unable to access the support they need and are often dependent on their families. The lack of understanding, support and suitable services can have a devastating impact. We want Government and local authorities to take action to transform lives. For further information visit http://www.think-differently.org.uk/campaign.

- Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

- Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.

The National Autistic Society is the UK's leading charity for people with autism and their families. Founded in 1962, it continues to spearhead national and international initiatives and provide a strong voice for all people with autism. The NAS provides a wide range of services to help people with autism and Asperger syndrome live their lives with as much independence as possible.

The NAS relies on the support of its members and donors to continue its vital work for people with autism. To become a member, make a donation or to find out more about the work of the NAS, visit the NAS website http://www.autism.org.uk.

For more information about autism and for help in your area, call the NAS Autism Helpline on: 0845 070 4004 10am-4pm, Monday to Friday, (local rates apply). The NAS Autism Services Directory is the UK's most comprehensive directory of services and events for people with autism. Visit http://www.autism.org.uk/autismdirectory to find autism services and support networks in your area.

National Autistic Society

Zamp Bionews, 23rd February 2009

To find out more about Autism and The Son-Rise Program and the Autism Treatment Center of America, please go here: http://www.autismtreatmentcenter.org

Disabled play area boost for city

Hamlet Centre chief executive Michael Rooney

Families with disabled children have been given a boost after news that the city is to get two new specialist play areas.

Charities say the facilities will enable families living in Norwich to take their children to playgrounds equipped for their needs. Norwich City Council is planning to give £40,000 from developers' contributions to create a supervised play area at the Hamlet Centre, in Ella Road, Thorpe Hamlet, and has already given £12,500 to the Norfolk and Norwich Scope Association (Nansa) towards new play equipment at its family resource centre in Woodcock Road.

Michael Rooney, chief executive of the Hamlet Centre, which offers activities and support to children and young adults with disabilities and additional needs, said the cash would make a difference to disabled children and their families.

He said: "Our play area is beginning to look its age. The new play area will be for users of our centre, but we also want to offer it to other families who can book to use the specialist play equipment. It will be somewhere they know is going to be suitable and safe."

Officers at Norwich City Council have been given the green light to draw up a more detailed proposal for the new play area at the Hamlet Centre.

Paul Nicholson, the council's children, young people and play manager, said: "It is a great organisation. They recently set up a mobile toy library, which has been a real success, and they are doing a fantastic job.

"The play area would be within the curtilage of the Hamlet Centre and for its users, but families will also be able to book to use the supervised play area. I think it's unique for Norfolk."

The government recently unveiled a strategy which said that every local authority should be looking to offer specialist play areas for disabled children. Mr Nicholson said: "We're well ahead on this as we've been looking into it for the past couple of years."

Work is planned to start in the next few weeks on installing artificial grass, a wooden play boat and a nest swing at Nansa.

For many families a visit to the local park is an easy trip out, but for those with children with additional needs it can be very difficult or even impossible.

Sheila Parish, chief executive of Nansa, said: "A nest swing will be a huge bonus because children with disabilities aren't always able to use the equipment in mainstream parks. It will be for children up to the age of eight and our next phase is to introduce equipment especially for older children with disabilities."

Ü Friends of Nansa have organised a fundraising bike challenge in April to fund the nest swing. Teams are invited to ride a 16-seater cycle and raise the first £100 for Nansa, with anything extra going towards the team's charity of choice. Anyone interested in taking part can call Jess Rice on 01603 414109.

Ü The Hamlet Centre is also looking for more volunteers and sponsorship. Call 01603 616094.

Ü Is your organisation fundraising for new community facilities? Call reporter Kim Briscoe on 01603 772419 or email kim.briscoe@archant.co.uk

 

Norwich Evening News, 23rd February 2009

DWP Minister Replies To UKAF On Autism And Winter Fuel Poverty

DWP Minister Rosie Winterton MP, (who is the Minister with responsibility for the Winter Fuel Payment) has replied to the call made by the UK Autism Foundation for urgent help for families and adults with autism and Asperger's Syndrome who are below the poverty line.

 

While Winter Fuel Payments are directed towards the elderly, the UK Autism Foundation has appealed to the Chancellor Alistair Darling to help all families with autism and Asperger's Syndrome who are in low-income households. There are families with autism who who have had to choose between heating and eating as they struggle to cope with life during the economic crisis.

 

Ivan Corea of the UK Autism Foundation said: 'We are delighted that DWP Minister Rosie Winterton is taking a long hard look at Autism and Winter Fuel Poverty. We urge Rose Winterton and Her Majesty's Government to look at the whole issue of Winter Fuel Payments and increase them for families with autism and Asperger's Syndrome in the 2009 Budget. The recession is affecting so many families with autism. Life is hard in any case, on a daily basis and the deepening recession is making matters worse. Parents, carers,children and adults with autism and Asperger's Syndrome in the UK need urgent financial help and support.'

 

Support for the UKAF's call came from parliamentarians of all parties in the House of Commons, in Westminster, with 55 MPs signing an early day motion (EDM 281) tabled by Rudi Vis MP on Autism and Winter Fuel Poverty in December last year.

 

DWP Minister Rosie Winterton has replied Ivan Corea's call to the Chancellor Alistair Darling to increase Winter Fuel Payments. The Minster said: ' We have negotiated a voluntary agreement with energy suppliers which means that the total level of assistance offered to vulnerable households by suppliers will increase to £150 million a year by 2011.' She added 'You may be interested to know that, as the Chancellor announced in his Pre-Budget report in November last year, for 2008/09 only, an extra payment of £60 will be made on top of the £10 Christmas Bonus. The Christmas Bonus is payable to those in receipt of a qualifying benefit during the relevant week.'

 

The DWP has also requested people to contact the following helpines regarding winter fuel payments:

 

* Disability Living Allowance and the disability premiums in the income-related benefits provide additional weekly payments and are related to the individual's circumstances. The most severely disabled people receive an additional amount of almost £8,000 per year in recognition of their extra costs. Employment and Support Allowance customers can receive an additional component for disability after 13 weeks rather than waiting 52 weeks for the payment of a disability premium as with Income Support. Where the support component is payable, there is also automatic entitlement to the enhanced disability premium (currently £12.60 for a single person).People can find out more about these benefits by telephoning the Benefit Enquiry Line on 0800 88 22 00.

 

UK Autism Foundation
Woodford Business Centre
113-115 George Lane
South Woodford
London E18 1AB
United Kingdom
http://www.ukautismfoundation.org

 

Medical News Today, 23rd February 2009

Disabled BBC presenter 'scaring' children

A disabled BBC presenter has become the victim of a campaign after parents suggested that she may scare children.

Worried parents claim that Cerrie Burnell - who was born with one arm - should not front CBeebies shows.

The decision to hire her has prompted a series of complaints to the BBC from angry parents. One father said that he wants to ban his daughter from watching the channel because he fears she may 'suffer nightmares'.

Another parent wrote: "Is it just me, or does anyone else think the new woman presenter on CBeebies may scare the kids because of her disability?"

Burnell and co-presenter Alex Winters stepped in as hosts of The Bedtime Hour and Discover and Do last month.

Digital Spy, 23rd February 2009 - Additional Picture from BBC Press Office

Having Scope and doing little about it

Scope is a leading UK disability organisation with more than 50 years experience in providing support to disabled people to increase their employment opportunities. The Welsh Assembly Government is a devolved government with nearly 10 years experience of falling short as an employer in the area of equal opportunities.

The development of the Leadership Recruitment Programme by Scope promotes awareness of staff diversity and the contribution disabled people can make to the workplace. It also aims to ensure that disabled people of graduate calibre achieve equality and are valued in society, rather than being overlooked.

Last month the programme marked a year since ending its first 12-month trial of running in the Welsh Assembly Government, who was one of many high-profile employers taking part.

Not a bad ongoing gesture from an organisation that seems to fail in this area, and needs to show a vast improvement when it comes to equal opportunities.

 

Mrs Wagstaff Presents, 23rd February 2009

Social care 'as important as NHS'

 

Three quarters of UK adults rate social case as importantly as NHS, survey shows

Over three quarters of British adults rate social care as importantly as the NHS, a survey has revealed.

Eighty-six per cent adults would favour an increase in public spending in the sector if it was used to make sure everybody who needs social care gets it, the Leonard Cheshire Disability charity survey revealed.

"Social care is so much more than just personal care, it's about living," said John Knight, assistant director of policy and campaigns for the charity, which helps provide services in support of disabled people in the UK.

"It can give disabled people much-needed freedom to live the life they want to lead – freedom that many people simply take for granted," he said.

Today the organisation, which helps disabled people in 52 countries, launched its Social Care Matters campaign, aimed at making the government ensure no one is left without the support they need because they can't afford to pay for it.

Sarah Smith, 38, from the West Country, has spina bifida and hydrocephelis. Under the government's direct payments scheme she has been allocated enough money to socialise outside her care home for a maximum of three hours a week.

She said she feels "trapped" by the system.

"I really don't have a proper life. It is so lonely. I can only go out with the support worker on a Wednesday afternoon, even if I would rather go shopping on another day," she said.

"You do not have spontaneity as a disabled person. You just have to slot in. You don't have choices; you just have to accept it as the way it is."

Social services is the largest, and most costly, area of local government, spread across health and well-being, parental care, over 50s, disabled people, carers, and home and community services.

But increased costs and reduced funding mean many local authorities are forced to limit the social care they provide, denying thousands of disabled people essential basic support.

"Social care should be as high on the government's agenda as the NHS," said Mr Knight. He blamed tightening budgets on "more and more disabled people…slipping through the net."

In England in 2006-07, over a quarter of working age disabled people who applied for social care were not offered any support, according to figures released by the charity, yet only 16 per cent of people questioned for the survey believed they would have to pay for their entire social care costs.

Gordon Brown has faced harsh criticism in recent months over several high profile cases of failures in the social care system, mainly in children's and young peoples' services.

 

In The News, 23rd February 2009

I was a child carer looking after my mum - and it turned me into the Hairy Biker Cook

Dave Myers has made his name as one half of the BBC TV chef duo the Hairy Bikers. His culinary skills were not honed, however, in the kitchens of top restaurants but at home - and out of necessity.

For his idyllic childhood was cruelly shattered at the age of eight, when his mother was struck down with multiple sclerosis. She had been a wonderful cook and provider of family meals - and Dave, an only child, assumed the role of both carer and chef.

Here, he tells his poignant - and often funny - story of how his mother's illness turned him into the celebrity chef he is today...

Scroll down to read more on MS and the Hairy Bikers' recipe for tandil lemon cake, with cherry topping...

Hairy Biker Dave Myers inherited his passion for hearty food from his mother and his enthusiasm for travel from both parents

Dave Myers often thinks of his parents as he climbs on to his motorbike and sets off on a new journey of culinary discovery. Sadly, they never lived to see their son become one half of the successful TV cooks, the Hairy Bikers.

It would have been a proud legacy: Dave inherited his love for biking from his father, his passion for hearty food from his mother and his enthusiasm for travel from both parents.

But he might never have learned to cook at all were it not for the fact that when he was just eight years old, his mother was diagnosed with multiple sclerosis (MS).

Today, after many years living all over the UK, Dave, now 51, lives in his home town Barrow-in-Furness with his partner Lili. His house is just a stone's throw from the streets of terrace homes where he spent many a carefree hour as a small child.

'My early childhood was great - happy and full of adventure,' he remembers. 'Our house backed on to the houses of lots of my friends, so I used to spend all my spare time playing outdoors with them.

'My mum, Margaret, was 42 when she had me. She'd been told she couldn't have children, so when I came along she and my dad Jim, who was already 55, were surprised and delighted.'

Dave remembers his mother as an energetic woman who seized life with both hands. 'She had a great sense of humour and was very active, a real doer. During the war, before I was born, she worked as a crane driver in the shipyard.

'She was also a fabulous cook. We always had hearty, homecooked meals - bacon and eggs for breakfast every day - even though we didn't have much money.

'Mum baked her own bread and I can still recall that wonderful smell filling the house. I used to love it when she made cakes and I could lick the bowl clean.'

But, almost overnight, life was to change for the whole family. Dave recalls sitting down for dinner as usual one evening, aged seven, looking forward to the steak and chips he could smell cooking in the kitchen.

His mother walked in with a tray full of food, lost her balance and fell, sending the dinner flying all over the floor. At the time, they laughed and joked: 'Looks like the steak's gone for a burton.'

With the benefit of hindsight, Dave now knows this loss of balance was no laughing matter: it was the first visible symptom of Margaret's MS.

A few months later, Dave's mother went for a lie-down because she was feeling tired. When she tried to get up again, she lost control of her legs and couldn't get out of bed. She ended up collapsing in a heap on the floor.

'She called out for help and I came running, but I was just a little boy,' Dave says. 'I wasn't big enough or strong enough and I didn't know what to do.

'There weren't any neighbours around, Dad was on a late shift and, of course, we didn't have mobile phones in those days. We had to wait until he came home at 10pm to help her. It was very scary.'

Tragic blow: Dave aged just eight with his mother Margaret just before he learned she had MS

Dave remembers making his dad a ham sandwich that evening - the first time he had to prepare dinner for the family because his mother wasn't capable. And after that incident, she never really got any better.

She went into hospital for three weeks for tests and was diagnosed with MS. Within only a year she was in a wheelchair. Dave and his father, newly retired from his job at a paper mill, became her full-time carers.

Down to earth, pragmatic and fiercely loyal to his parents' memory, Dave is not one to feel sorry for himself.

Yes, life changed, he admits, but he got on with it: 'Becoming a carer didn't ruin my life - I still had lots of mates - but it certainly tied my childhood down.

'I couldn't go to bed until Mum went to bed. Dad would take Mum's legs and I'd take her arms and we'd carry her up the stairs each night. It wasn't until I was 13 that we were moved into a council flat with proper facilities and adaptations for a disabled person.

'We were offered virtually nothing by the authorities, no respite care at all. But once a year, we'd go away with the MS Society to a holiday camp where Mum would be looked after and I could play with other kids whose mum or dad had MS. There were also coach trips to the Lake District and other sites of interest.

'Looking after Mum was a lot of responsibility, although Dad shouldered most of it, and our extended family was also very supportive.'

For Dave, the hardest thing by far was watching his once vivacious mother become a shell of her former self.

'Like 15 per cent of those with MS, she had no respite, no remission, just a steady deterioration,' he says. 'But even worse than the disease were the brutal medications she was prescribed.

'She was a person full of energy but unable to expend it because of her MS, so she got extremely frustrated. The doctors' response was to give her tranquillisers to calm her down. Then, because she could not sleep, they gave her barbiturates.

'The drugs knocked the stuffing out of her. She had no will to cope with her illness, she'd just sit there passively.'

Margaret suffered from mood swings and extreme emotions that she was not always able to control. Sometimes, she would also make involuntary noises.

For a teenage boy, such outbursts could be embarrassing.

'When I was 13, I got the part of Toad of Toad Hall in the school play, ' Dave recalls. 'My teachers were adamant that Mum should come to see me perform. But halfway through the performance she started screaming and wailing - I'm not sure whether it was excitement or what. She simply couldn't control herself.

'I remember wishing she hadn't been there. I got a bit of flack for it and that finished me off for school plays.'

Dave in his pram as a baby with his mother Margaret

On another occasion, Dave took his mother for a walk in a local park. All of a sudden, she started crying and shouting hysterically at him. Bewildered and embarrassed, he didn't know what to do.

'I wheeled her into a rosebush and then let her tyres down, so the wheelchair wouldn't roll,' he says. 'Then I left her there and went to get my dad.

'He wasn't angry with me; he understood why I'd done it. When we got back to Mum, a park keeper was with her, trying to reinflate her wheels with a bicycle pump.'

Margaret's disability meant the housework and cooking were left to Dave and his dad.

'He did his best but for the first year we lived on a diet of instant potato, tinned meat and tinned peas,' says Dave. 'It soon became clear that if we were going to survive we'd both need to learn to cook properly.'

He adds: 'We found a cookbook that had come with the cooker, dated from the end of the Second World War. It was called The Radiation Cookbook and we started to experiment with recipes from it.

'One of the first things I ever cooked on my own was a cheese and potato pie. Dad ate it without complaint but he was a traditional Northern man - for him a vegetarian dish was a side dish, not a complete meal.

'Dad regularly used to take me on the back of his bike to go fishing in the sea off Barrow. Whatever we caught we'd fillet for dinner.

'I remember watching him peel grapes so he could make sole Veronique, except he didn't have any sole so he used plaice. Still, it looked and tasted really good. If we caught more fish than we could eat, I'd sell it around the houses for pocket money.'

Being confined to a wheelchair meant Margaret gained weight, and when the doctor advised her to diet, the whole family joined in.

'We all ate salads,' says Dave. 'I was 11 and started to construct complicated salads with all kinds of ingredients, such as tinned salmon and peeled cucumbers. I tried to make them look as interesting and appealing as possible.'

Dave soon found himself becoming not just a proficient cook, but an adventurous one.

He admits there was a lot of trial and error and his creations weren't always a success. 'Garlic was just starting to appear in the supermarkets, so I thought I'd cook a recipe with garlic. But, being unfamiliar with it, I used three whole heads, instead of three cloves. Dad diplomatically said he wasn't sure he liked garlic, and I had to agree with him!'

When Dave was 17, tragedy suddenly struck for a second time. His father, then 72, suffered a debilitating stroke. The first doctor who called round told Dave to give him some aspirin and then left him alone to care for both parents.

'I put Dad in his bed and put Mum in my bedroom, with a commode. I had no idea what I was going to do. Fortunately, when the district nurse came round, she realised I couldn't cope on my own. She sent another doctor, who asked, "Which parent do you think you can cope better with?"

Hairy moment: Dave, left, on the road with his fellow biker Simon King

'It was awful to have to choose, but I said Dad because he had a chance of recovery, and I knew Mum was never going to get any better. Soon afterwards, she went into hospital and, because she was 60, was put on the geriatric ward. Dad stayed with me. Sadly, Mum would never come home again.'

Dave managed to complete his A-levels and take an art foundation course in Preston, commuting every day for a year, so he could look after his father and visit his mother.

But when he was 20, his father died following a second stroke.

'They left it to me to tell Mum,' he says. 'She was absolutely heartbroken, as you can imagine. It made her very depressed.'

When Dave moved to London to study at Goldsmiths College, he kept the council flat in Barrow so he could spend the holidays with his mother. Three years later, she died of pneumonia, common among those who are bedridden and severely ill with MS. She was 65.

Only after both his parents had died did Dave feel angry. 'I realised the doctors hadn't done anything constructive to help Mum and that we hadn't got any respite care. We'd needed far more support. I also felt angry at the way Mum's spirit had been destroyed by MS.'

After graduating, he took a job as a make-up artist in the BBC's prosthetics department. It was while he was working on a Catherine Cookson film in Newcastle that he met Simon King, then a location manager, who shared his love of food, motorbikes and travel.

They remained in touch over the years, crossing paths several times. Then, in 2002 they decided to follow their dreams and initiate a project based around their three great passions. They made a TV pilot, which then developed into a short series, and the 'Hairy Bikers' were born.

'I don't think the Hairy Bikers would have come about if Mum hadn't got ill,' Dave says. 'My passion for food really is my mum's legacy. Caring for her not only forced me to learn to cook, it also made me self-reliant and self-motivated.'

Although it's now almost 30 years since his mother died, Dave still supports the MS Society. He and Simon have put their names behind the fundraising Cake Bake Initiative, which takes place on May 1, encouraging everyone who can to bake a cake to raise money for the MS Society.

He says: 'Baking is wonderful - it's so inclusive. The whole family can share the idea of making cakes, and you can't beat a house full of the smell of freshly baked cakes. I still make my mum's Victoria sandwich and butterfly cakes, and her "dead fly" pie with currants.'

The Hairy Bikers are currently filming a 28-episode series called The Hairy Bikers Food Tour Of Britain, testing out the culinary delights of each region. It will be shown in the summer on BBC2.

'In one episode I'll be cooking my Mum's wonderful Yorkshire Pudding recipe, using her old tin, which I've kept for decades,' says Dave. 'It never works as well, or tastes as good, if I use anything else.'

• Cake Break is the MS Society's official fundraiser for this year's national MS Week (April 27 to May 3). To apply to host a Cake Break call 0870 241 3565 or visit www.mssociety.org.uk/cakebreak, where there is also a film on hosting an event. www.mssociety.org.uk.

The impact on millions of unsung carers

• Each year more than two million people become carers. Three in five will become carers at some point.

• A carer is usually someone who looks after a parent, relative or neighbour owing to sickness, old age or disability.

• Help and financial support is available. Social services will assess the impact of caring, so keep a diary.

• Carers may be offered a break from caring or help with housework.

• Any special equipment, housing modifications and nursing care will be assessed separately.

• Carers have the right to request flexible working arrangements.

• Your local authority will assess what you will have to pay towards community care. This will be based on income and capital.

• You may be entitled to a Carer's Allowance of £50.55 a week if you are at least 16 and spend more than 35 hours a week caring for someone.

• For more information go to www.direct.gov.uk/en/caringforsomeone; www.carersuk.org.

What is MS?

Multiple sclerosis (MS) is the most common disabling neurological disorder affecting young adults. An estimated 85,000 people in the UK have MS. It occurs as the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system. This damage means messages between the brain and the body are not transmitted as they should be, leading to a range of symptoms, including loss of sight and mobility, pain, fatigue and depression. There is no cure for MS and few effective treatments.

The four types

There are four types of MS, each with its own characteristics:

• Relapsing/remitting: The most common type of MS, where people experience relapses (or attacks) followed by a period of remission.

• Primary progressive: Symptoms begin and steadily worsen, resulting in a continued progression in disability. You will not have distinct relapses and remissions.

• Secondary progressive: Most people who have relapsing/remitting MS later develop a form known as secondary progressive MS. This type of MS is identified when your condition becomes steadily worse, and your disability progresses, for a period of six months or more, whether you continue to have relapses or not.

• Benign MS: If you have a small number of relapses followed by a complete recovery, you may be described as having benign MS. It is only possible to make a diagnosis of benign MS once you have experienced little or no disability for ten to 15 years. However, a diagnosis of benign MS does not guarantee that you will be free of problems; a relapse may occasionally occur after many years in which your MS has been inactive.

In the long term, life expectancy with MS is around the same as normal. Only one in five people with MS need to use a wheelchair in the longer term.

 

The Hairy Bikers discovered this great cake while travelling south through Argentina in a town called Tandil.

Cherry on top: Tandil lemon cake makes a great tea-time treat

 

INGREDIENTS

• 100g unsalted butter (at room temperature)
• 225g caster sugar
• 3 eggs (separated)
• 1 tbls lemon zest
• 350g plain flour
• 2 tsp baking powder
• 1/2 tsp of cinnamon
• 200ml whole milk
• pinch of salt
  

FOR THE FRUIT TOPPING

• 300g tinned or bottled sweet, dark cherries in syrup
• 1 tbls cornflour
• 2tbls lemon juice
• 2tbls cherry brandy

METHOD

1) Pre-heat the oven to 180 C, butter the inside of a 9-inch springform tin and line with buttered parchment paper.

2) In an electric mixer, beat the butter and sugar until light and fluffy. Beat in the egg yolks one at a time then add the lemon zest.

3) Blend the flour, cinnamon and baking powder together in a bowl and add to the butter and sugar mixture. Beat together to form crumbs. Then add the milk gradually and mix to form a heavy batter.

4) In another bowl, beat the egg whites until they form soft peaks then fold carefully into the cake mixture.

5) Pour the cake mixture into the cake tin and bake in the preheated oven for 25 to 30 minutes or until a skewer inserted into the centre can be removed cleanly.

Set aside to cool.

FOR THE TOPPING

1) Drain the cherries and put aside a cup of the syrup.

2) Place the cup of syrup in a saucepan and bring to the boil. Reduce the heat to a simmer.

3) Mix the cornflour with the lemon juice and add to the syrup, stirring constantly. When thickened, remove from the heat and add the cherry brandy. Set aside to cool.

4) On the warm cake, add a layer of cherries then pour over the syrup.

5) Leave to cool completely before serving best with a big dollop of ice-cream or clotted cream.

 

Mail Online, 22nd February 2009