More than 40 NHS organisations have ‘policies of concern’ on institutional care

More than 40 NHS primary care organisations – and possibly many more – have quietly introduced policies that could see disabled people with complex healthcare needs shunted into residential or nursing homes against their wishes, new research has revealed.

Disabled campaigner Fleur Perry, who edits the website Disability United, reached the conclusion after analysing responses to freedom of information requests she had put in to every one of England’s 200-plus clinical commissioning groups (CCGs).

She decided to carry out the research after it emerged in October that Southampton City CCG had introduced a policy that disabled people who needed more than eight hours of long-term healthcare a day should be pushed into residential or nursing care rather than being allowed to continue living at home.

The Southampton policy made clear that it had been developed because of the need to make “effective use of finite resources” and for care packages to be “cost effective”.

Disabled activists say lawyers are now hoping to take a case that will show that some of the policies being introduced by CCGs are unlawful.

The CCG policies apply to people who have complex health needs and have been assessed as eligible for care arranged and funded solely by the NHS, known as NHS continuing healthcare (NHS CHC).

Perry herself receives support funded by NHS CHC, which enables her to live independently in her own home.

Of the 212 freedom of information requests Perry submitted – asking for their policies on how they make NHS CHC decisions – she received replies from 122 CCGs.

A majority of those that responded said they relied on the Department of Health’s National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, and the NHS England Operating Model for NHS Continuing Health Care*.

But 53 CCGs said they had drawn up their own policies, and Perry found that 44 of them contained “concerning” phrases that suggested the CCGs would move disabled people eligible for continuing NHS healthcare into institutions against their wishes, even if the cost of the homecare package was only slightly more expensive than residential care.

Perry, whose own CCG did not respond to her FoI request, said: “This research shows that in many areas of the country, I’d have been forced into a care home against my will long ago. I find that a very disturbing thought.

“Each of those policies would have to have been signed off by a board of perhaps a dozen people.

“This means that there are likely more than 500 people working for our NHS who would not object to me, or someone like me, being moved [into an institution] against their will.”

One of the CCGs says in its policy document: “Unless there are exceptional circumstances the CCG will fund either the most cost effective option or any other option which is no more than 10 per cent more expensive than the most cost effective option.”

Another says: “Home care packages in excess of eight hours per day would indicate a high level of need which would be more appropriately met within a residential placement.”

Perry said she would be “very shocked” if the number of CCGs with worrying NHS CHC policies was not much higher than 44, because of the number of CCGS that failed to respond to her freedom of information request.

She says, in a blog on Disability United: “Somebody who has never met the person in question can sign a bit of paper and change everything about a person’s way of life.

“They could read a summary of a person’s medical needs, look at the cost, decide where they’re going, send a letter, have a taxi arranged and that would be the end of the matter.

“It wouldn’t make a difference whether the person was happy to be moved or not, or whether their health needs were well provided for in their own home.”

Perry now plans to write about her concerns to the 44 CCGs and the NHS continuing healthcare policy team.

Linda Burnip, co-founder of Disabled People Against Cuts, which has supported Perry’s research, said: “The potential limiting of CHC funding along with restrictions on local authority funding for independent living and the ever-increasing charges for social care which many local authorities are introducing are extremely worrying and mark a very real regression of disabled people’s rights to not only choose where and with whom they live but to take part in any significant way in civil society.”

*The NHS England operating model stresses that “personalisation should be at the heart of all NHS Continuing Healthcare assessments and the provision of care and support”, and calls for “innovative, personalised packages of care”.

The Department of Health national framework says CCGs “should commission services using models that maximise personalisation and individual control and that reflect the individual’s preferences, as far as possible”, and that although cost can be taken into account, it “has to be balanced against other factors in the individual case, such as an individual’s desire to continue to live in a family environment”.

The framework points to a 2005 human rights legal case in which the high court found that forcing a woman who needed constant nursing care into an institution would infringe her right to a family life under article eight of the European Convention on Human Rights, and that article eight should be given “considerable” weight in such cases, although the cost of a package “is a factor which can properly be taken into account”.

12 January 2017

 

 

May’s mental health speech ‘is smokescreen to hide damage of welfare reform’

The prime minister has been accused of hypocrisy, after making a high-profile series of announcements on the “burning injustices” facing people in mental distress, despite research that has linked her own government’s welfare reforms with hundreds of suicides.

Theresa May used the package of measures that she claimed would “transform” mental health support in schools, the workplace and the community to illustrate what she said was her “commitment to building a fairer society”, in a speech at the Charity Commission’s annual meeting.

But furious disabled activists have accused May of using the announcements as a smokescreen to hide the increasing anger over the brutal impact on people in mental distress of her government’s social security policies.

In late 2015, Government-funded research by public health experts from the Universities of Liverpool and Oxford concluded that the programme to reassess people on incapacity benefit through the work capability assessment (WCA) was linked to 590 suicides in just three years.

And only last week, Disability News Service (DNS) reported that three opposition parties had called for an independent inquiry into claims that Tory ministers covered up links between the WCA and the deaths of benefit claimants.

But this week, May announced the “first steps” in what she said was a plan to “transform the way we deal with mental health problems at every stage of a person’s life”, and made no mention of substantial evidence of the harmful impact on people in mental distress of her government’s social security reforms.

The Department of Health (DH) also published a new progress report on its cross-government suicide prevention strategy this week, in which it admits that it is mandatory for the Department for Work and Pensions [DWP] to carry out “peer reviews” of cases in which “a claimant has died by suicide and there is an allegation that Departmental activity may have contributed”.

But the progress report fails to point out that DWP ministers appear to have failed in 2012 to share seven peer reviews that mentioned the WCA with Professor Malcolm Harrington, the independent expert they had appointed to review the assessment, as reported by DNS last week.

DWP ministers also appear to have failed in 2010 to pass on to Harrington a letter, written by a coroner, which raised serious concerns about the safety of the WCA and called for a review of the policy not to seek medical evidence from a GP or psychiatrist for any claimant applying for out-of-work disability benefits who had a mental health condition.

The new DH suicide prevention report also admits that DWP has reviewed the guidance for healthcare professionals who carry out WCAs on whether a “substantial risk of harm (including suicide/self-harm) might be triggered by work, or work-related activity”.

But the report fails to point out that this review led to the guidance being substantially weakened, making suicides more likely, and leading to a substantial fall in the proportion of claimants of out-of-work disability benefits who do not have to carry out work-related activity.

John McArdle, co-founder of Black Triangle, said the government “continues to deny against all the evidence” that the WCA process causes people with mental health conditions to take their own lives, and causes many others significant mental distress.

He said: “What Theresa May has said is nothing short of a smokescreen to defuse the rising tide of indignation and anger at the way people with mental health conditions are being treated by the state.

“It’s a sop to make voters think that this will be a benevolent and compassionate administration in comparison with the last one, and nothing could be further from the truth.

“We have hundreds of stories of people [harmed by the government’s social security policies] and they continue to deny the catastrophic effects that welfare reforms are having through losing their disability benefits and being sanctioned.”

He said that May’s statements this week on mental health were “sheer propaganda” and “an insult to the dead and people with mental health problems who are being persecuted under this regime”.

Linda Burnip, co-founder of Disabled People Against Cuts, said she was “flabbergasted” at the hypocrisy of May’s comments and announcements on mental health.

She said May was attempting to distract voters’ attention from government policies that had “basically pushed people to their death”.

Burnip pointed to similar hypocrisy by international development secretary Priti Patel last month, when the former DWP minister announced that the government wanted to become a “world leader” on disability, just weeks after the UN committee on the rights of persons with disabilities had found the UK government guilty of “grave or systematic violations” of the UN disability convention as a result of its social security reforms.

12 January 2017

 

 

May promises to address mental health ‘burning injustice’… but fails to fund her pledge

The prime minister has been criticised for offering less than £20 million in new funding to go alongside a string of announcements on how her government will address the “burning injustice” of how society treats mental ill-health.

Theresa May used the package of measures that she said would “transform” mental health support in schools, the workplace and the community to illustrate what she said was her “commitment to building a fairer society”, in a high-profile speech at the Charity Commission’s annual meeting.

Much of the emphasis was on support in schools, including mental health training for staff, while there will be a review of children and adolescent mental health services, led by the Care Quality Commission, and a new green paper on children and young people’s mental health.

But she also announced a new review of support for employees with mental health problems, which will include an examination of workplace discrimination.

And in one of only two announcements to be accompanied by new funding, May said an extra £15 million would pay for new health-based “places of safety” in the community, such as “crisis cafes” and community clinics, which will “provide and promote new models of community-based care” and prevent people who have been detained under the Mental Health Act from being locked up inappropriately in police cells.

May also pledged to “speed up” the government’s programme to expand digital mental health services, so that “those worried about stress, anxiety or more serious issues can go online, check their symptoms and if needed, access digital therapy immediately rather than waiting weeks for a face-to-face appointment”.

And she said the Department of Health (DH) would review the debt and mental health evidence form.

Service-users in debt are currently charged up to £300 by their GPs to fill in the form to prove they have a mental health problem, so that creditors can make adjustments to how they deal with their case.

A DH spokesman confirmed to Disability News Service yesterday (Wednesday) that May’s announcements included only £18 million of new money, with the £15 million for new places of safety and £3 million for a pilot to trial digitally-assisted therapy, while the level of investment for mental health first aid in schools was “still to be determined”.

Most of the reaction to May’s announcements from disabled activists with experience as mental health service-users was highly critical of the failure to provide substantial new funding.

Alisdair Cameron, co-founder of the Recovery College Collective (ReCoCo) and team leader of the Newcastle mental health service-user organisation Launchpad, said May’s announcements suggested “an exercise in branding”, while “many of the more challenging aspects of mental health were conspicuous by their absence”.

He said: “I think what’s very interesting is what wasn’t mentioned: lots on preventative work, nothing substantial for those who’ve developed severe or enduring problems, lots on children and young people, nothing significant for adults.

“Mention of workplaces and depression and anxiety, nothing for those unable to work because of profound problems and distress.

“It’s as if a demarcation has been drawn between the saveable and the damned, the deserving and the undeserving.”

He added: “Also absent was any meaningful monetary commitment, and the strongest likelihood is that the announcements will mean next to nothing in practice, but they’re made to signal that this prime minister and her government care.

“Not enough to spend, but to express how much they care.”

Professor Peter Beresford, co-chair of Shaping Our Lives, said: “The message doesn’t seem yet to have got through to this government that making major policy announcements which aren’t linked with major new funding or listening to the concerns of the people most affected is a key reason why more and more people feel politically disaffiliated and excluded from mainstream politics.

“This is exactly the situation with this week’s mental health announcements.”

Paula Peters, a member of the steering group of Disabled People Against Cuts and a member of the Mental Health Resistance Network (MHRN), said May’s words were “hollow”, with the focus on mental health first aid in schools rather than access to “tailored, individualised support” and under-funded child and adolescent mental health services.

She said: “They are closing mental health services again this year and services are closing all over the place.

“Children desperately need the support and they can’t get access to it. It is hollow words from Theresa May.”

Another leading campaigner, Dawn Willis, said on Twitter: “#mentalillness trending because Theresa May says she wants to tackle STIGMA. Think I’d prefer she tackled service funding and saved some lives.”

Alastair Campbell, Tony Blair’s former Downing Street communications director, said on Twitter that his “big worry on #mentalillness is that politicians see improved attitudes re stigma as a substitute for the services needed”.

He said that although May was saying “a lot of the right things” on mental illness, he was concerned that the government’s line was that “it’s not all about money”.

He added: “Of course it is not ALL about money. But a lot of it is. And services are being shredded in some places.”

Liz Sayce, chief executive of Disability Rights UK, was more positive about May’s announcements.

She said: “It’s good to see such high level commitment to addressing injustices faced by people living with mental health issues – but the proof will be in what actually happens.

“It’s welcome that the prime minister has talked about discrimination in the workplace, and the important roles of schools and employers: this is a positive shift from more usual discussions of mental health that focus only on treatment, as though all people need for a good life is a service (not rights, not social participation, not money – just a medical model solution).”

But Sayce said there were still “a lot of injustices to tackle”, such as “the social care crisis that means many people are stuck in psychiatric wards for no good reason, when they don’t want to be there; the ever increasing use of compulsory detention and treatment, especially in relation to black men; and the continuing use of seclusion and restraint, which can significantly damage well-being and trust”.

And she added: “We need to be confident that the action will genuinely address the injustices.

“With relatively few new resources, and a significant set of issues to address, we need regular progress reports to assess what impact the new measures are having.

Norman Lamb, the Liberal Democrat shadow health secretary and a former care services minister in the Tory-Liberal Democrat coalition, said May’s announcements amounted to “a puny response to a burning injustice and an attempt to cover up for this government’s failure to deliver on promised investment for children’s mental health”.

He said the measures to improve mental health care in schools had already been agreed during the coalition, and the current government had “failed to ensure the investment needed to implement them has got through”, while much of the extra £1.4 billion of funding already secured for child mental healthcare was “being diverted to prop up other services”.

He said: “Unless the government addresses the funding crisis facing the NHS and ensures extra investment gets through to where it’s needed, we will not see the improvements in mental health care that are so badly needed.”

Asked how the government could address the problems with mental health services without significant new funding, a  Department of Health spokesman said: “This government has made over £11 billion of funding available for mental health services this year, and by 2020, there will be another £1 billion a year on top of that.

“We have also made a record £1.4 billion of additional investment for children and young people’s mental health and eating disorders over this parliament.

“We know change will not happen overnight but all local areas must provide detailed plans of how they will transform services and their performance is being measured carefully and transparently.”

Meanwhile, there was praise from Deborah King, co-founder of Disability Politics UK, for May’s decision to highlight the importance of mental health first aid training in her speech.

She added: “She was right to remember Kevan Jones MP and Charles Walker MP as examples of politicians coming out about mental ill health, which helps to reduce stigma.

“We would urge Theresa May and Jeremy Corbyn to whip their MPs to attend mental health first aid training themselves.

“This would enable them to be more supportive to their constituents, fellow MPs and Commons staff.

“They would also gain a better understanding of mental illness, which would enable them to make better policy.”

Alongside May’s announcements, the government published its response to last year’s report from its Mental Health Taskforce, accepting in full the relevant recommendations.

As well as health, the government accepted recommendations on social work, mental health research and data, the criminal justice system, housing, and stigma.

Recommendations on employment included a call for an expansion of the much-criticised policy to integrate employment advisers into psychological therapy services, while the taskforce report also included the controversial conclusion that “employment is vital to health and should be recognised as a health outcome”.

12 January 2017

 

 

Fresh anger over Mind’s government links as Farmer heads new review

The appointment of Mind’s chief executive to head an employment review for the prime minister has raised fresh concerns among disabled activists about the mental health charity’s closeness to the government.

Prime minister Theresa May announced this week that Paul Farmer and the former chair of banking giant HBOS Lord [Dennis] Stevenson would head a review of mental health in the workplace, which will include a review of discrimination laws.

It was one of a series of measures that May said – in a speech to the Charity Commission’s annual meeting – were aimed at dealing with the “burning injustice” of mental health.

The government said the review would look at “how best to ensure employees with mental health problems are enabled to thrive in the workplace and perform at their best”, including “promoting best practice and learning from trailblazer employers, as well as offering tools to organisations, whatever size they are, to assist with employee well-being and mental health”.

The review – which will be overseen by Number 10 and not the Department for Work and Pensions (DWP) – will also make recommendations on combating the workplace discrimination faced by employees with mental health conditions.

But Farmer’s appointment comes only two months after he was caught lying to mental health activists outside Mind’s head office in east London about the charity’s interest in seeking DWP contracts under its new Work and Health Programme.

Farmer told protesters on 31 October that the charity had “no contracts with DWP” and that he was “not interested in future contracts at this stage”, but a disgruntled employee later leaked internal documents showing that Mind was applying to join a DWP framework that would allow it to bid for contracts.

The protest had been sparked by the decision of the charity’s policy and campaigns manager Tom Pollard to join DWP on secondment as a senior policy adviser.

Farmer also led the government’s Mental Health Taskforce, which concluded in its report that employment was “vital to health and should be recognised as a health outcome”, when many campaigners – and professionals – warn that this is not the case for all mental health service-users.

Among those critical of Farmer’s latest government appointment was Professor Peter Beresford, co-chair of the national service-user network Shaping Our Lives, who said the government had again made a key policy announcement without any “major new funding or listening to the concerns of the people most affected”.

He told Disability News Service: “Particularly concerning is the close role that Paul Farmer, chief executive of Mind, historically a campaigning organisation for mental health service-users/survivors, plays in these developments.

“Nothing serious yet being done about the damage being done to mental health service users by so-called welfare reform.

“No serious improvement likely to improve the situation of BAME mental health service users.

“An even greater gap opening up between government and some of the most marginalised people in society, while the charities that are meant to be speaking up for them are compromised by their closeness to a government that continues to undermine the life chances of mental health service users/survivors.”

Paula Peters, a member of the steering group of Disabled People Against Cuts and a member of the Mental Health Resistance Network (MHRN), said Farmer’s decision to lead the review was “absolutely deplorable”.

She said Mind was working “hand in glove” with a government whose policies were “putting mental health service-users in distress”.

She added: “Mind don’t represent people in mental distress at all.”

MHRN is campaigning to persuade local Mind charities to disaffiliate from the national charity over its links with DWP.

John McArdle, co-founder of Black Triangle, said he was “utterly appalled” to see Farmer leading the review, while Alisdair Cameron, team leader of the Newcastle mental health service-user organisation Launchpad, asked on Twitter: “Paul, when did Mind become an arm’s-length branch of Govt?”

Mind stressed that neither the charity nor Farmer were being paid for his work on the review, and that it had been commissioned by Number 10 and not DWP.

A Mind spokeswoman said: “This is an independent review that aims to highlight what employers are doing to promote workplace wellbeing and to share best practice.

“Mind has worked with employers over many years to improve mental health in the workplace and Paul’s involvement in this review is an opportunity to share our expertise and contribute what we know about what works.

“Mind is a politically-neutral charitable organisation that campaigns and lobbies government on issues affecting the people we represent – Paul’s involvement in this review in no way compromises this.”

12 January 2017

 

 

High-profile social care funding demands ‘risk ignoring voices of service-users’

The latest attempts by politicians and charities to push for a solution to the social care funding crisis risk ignoring the voices of service-users, according to disabled campaigners.

They spoke out as representatives of the social care and health sector and a cross-party group of MPs tried to put further pressure on the government over the need for more funding.

An open letter to the prime minister, signed by 75 individuals and organisations across the health and social care sector, was published on the same day that Liberal Democrat shadow health secretary Norman Lamb issued a joint statement from cross-party MPs that warned of “very serious” consequences if the government did not take immediate action to deal with the “unsustainable strain” on the NHS and the social care system.

Lamb then raised the issue at this week’s prime minister’s questions, and Theresa May agreed to meet his group of MPs.

Both the open letter – drafted originally by the older people’s charity Independent Age – and the MPs’ statement call on the government to establish a cross-party review of health and social care funding.

But Professor Peter Beresford, co-chair of the national service-user network Shaping Our Lives, and the Independent Living Strategy Group (ILSG) both spoke out this week to warn that disabled people and other service-users needed to be at the centre of any such discussions and reviews.

ILSG, chaired by the disabled crossbench peer Baroness [Jane] Campbell and whose members include Shaping Our Lives, says in its open letter to the prime minister that, while it supports the call for a cross-party review, there is a “need to ensure that the people who use such support are central to, and have opportunity to influence any proposed settlement”.

It adds: “We are our own experts on the support we need and therefore we must be included in any discussion.”

In the wake of continuing emphasis by politicians and the media on the care needs of older people, the ILSG letter also points out that a third of social care spending supports working-age disabled people.

Beresford told Disability News Service that he was unhappy with the failure to put service-users and carers “fully and equally” at the heart of the Independent Age letter.

He said: “They don’t call for the constituencies that are most affected by this crisis – the people that are dying as a result – for their involvement in it.”

And he was critical of the decision of Helena Herklots, chief executive of Carers UK, one of the organisations to sign the Independent Age letter, to accept a CBE in last week’s new year honours.

He said: “How can you be part of a carers’ organisation in 2017 when you know what is being done to disabled people and carers and accept a CBE?”

Beresford also said there was no point discussing social care “in isolation”, without also examining welfare reform and housing.

He said there had been “minimal” involvement of service-users in social care policy development over the last six years.

He agreed that there had to be “a root and branch review” but that it must be “inclusive”of user-led organisations, disabled people’s organisations, carers’ groups, trade unions and organisations of social care professionals, and must include them “on equal terms”.

He said he was concerned that any inquiry might instead be tilted too much in favour of other “very powerful interests”.

He said: “Without the stakeholders… you can’t provide the right answer and it’s as simple as that, and it’s got to be a long-term answer.”

Beresford said there had been a history over the last 20 years of politicians “avoiding biting the bullet” on social care funding.

He said that funding social care adequately would be cost-effective because it would cut costs in so many other areas, while the only acceptable solution was to do so alongside the introduction of a progressive system of general taxation.

But he said that increasing funding for social care was not the only answer to the “desperate crisis”, because any solution also needed to address the culture of social care.

There needs to be both an appropriate person-centred culture as well as adequate funding, he said, and added: “Anything else is just tinkering at the edges.”

12 January 2017

 

 

PIP claimant set to take DWP to court over refusal to allow him to use email

A disabled benefit claimant is set to take the Department for Work and Pensions (DWP) to court over its refusal to allow him to communicate with its civil servants via email.

Mark Lucas is facing a reassessment of his personal independence payment (PIP) claim next month, but is refusing to return his claim form by post because he does not think a paper-based system is secure.

He has asked DWP to allow him to communicate via email as a reasonable adjustment under the Equality Act, but says he was told this was not possible.

Now he expects to lose his PIP next month – he currently receives the standard rate of the daily living component – because of his refusal to submit a written claim form.

He has secured legal aid and a lawyer to fight his case and seek damages for disability discrimination.

Lucas, from Staffordshire, told Disability News Service (DNS) that he does not trust DWP to deal with benefit claims by paper because it previously altered a written statement he had submitted in 2013 as part of a jobseeker’s allowance (JSA) claim while he was at university, and then accused him of fraud and fined him £2,500.

DWP eventually agreed that he would not have to pay the fine, he said, after he proved that a DWP officer had added a paragraph to the statement, but he also took the case to tribunal – and won – so he could clear his name.

Lucas, who used to work in IT, said there are ways to check that the contents of an email have not subsequently been altered.

Another reason for his wish to communicate via email is that one of the side-effects of the epilepsy medication he is taking is memory loss, and it is much easier for him to keep track of communication if done by email.

With communication via post, DWP can claim that a page of a letter was missing or the letter itself never arrived, he said.

Lucas said DWP used such tactics to “target people who cannot fight back”, by making it easier to force more disabled people off benefits, and so cut the social security bill.

He said: “They would not be able to get away with what they have been able to get away with if they allowed email.”

He added: “They are providing a service for disabled people. They should make the service as inclusive as possible.”

And he pointed out that he was able to provide all of his documents safely to the tribunal service via email.

He said that the way he was treated following the JSA fine led to a “mental breadown”.

He was denied PIP at the same time, as a result of the fraud claim, and was left “destitute” for a year while he cleared his name, forcing him to live off an overdraft and building up about £500 in bank charges that he is still trying to persuade DWP to reimburse.

He only had his PIP reinstated in December 2015.

Lucas said he is hoping that other disabled people who take medication that effects their memory will benefit from his court case if he is successful.

A DWP spokeswoman said in a statement: “We do not recognise this version of events. If Mr Lucas requires a reasonable adjustment he can raise this and it can be implemented for future correspondence.

“Claimants are entitled to request to receive all communications from the department by email on the grounds of disability under the Equality Act 2010.

“When such a request is received, it must be for a valid reason which relates to the individual’s disability, that is, the customer finds it more difficult or they are unable to communicate and use our services through usual communication and contact routes because of their disability.

“We would also seek to explore whether alternative adjustments (eg large print/Braille) may suffice, but if this is not possible then email communications may be agreed.

“We don’t email claimants as a matter of course due to the potential risks these pose to citizens and DWP.

“In addition DWP must operate within its legislative framework and follow our business processes including records management. Therefore email correspondence must be carefully managed.”

The spokeswoman was subsequently told last night (Wednesday) that DNS had heard a recording of a member of staff in DWP’s PIP department telling Lucas: “We will not communicate via email.”

The DWP spokeswoman had not responded to this further evidence by noon today (Thursday).

12 January 2017

 

 

Children begin to receive prostheses that will help them run, swim… or play the violin

Hundreds of disabled children in England are starting to benefit from a new fund that will provide them with the specialist prosthetic limbs they need to take part in sports and other activities that were previously inaccessible to them.

The Department of Health (DH) has provided £750,000 to fund running blades and other activity prostheses in a trial that will allow under-18s who were born without a limb or have lost a limb to take part in activities such as team sports, swimming, climbing, dancing and playing musical instruments.

The funding is being provided through NHS limb centres, which are being given the money to source and fit the prostheses.

Another £750,000 is linking research centres with expertise in child prostheses with experts from the NHS, industry, and clinical academia.

The £1.5 million fund was announced by health secretary Jeremy Hunt during last summer’s Paralympic Games in Rio, and the first children have now begun to receive their activity prostheses.

Although the trial will only run to the end of 2017-18, there are hopes that – if it proves a success – DH will extend the funding.

LimbPower, the national disability sports organisation for people with limb impairments, is supporting DH by alerting families to the fund’s existence and helping health professionals access it.

Carly Bauert, children’s prostheses coordinator for LimbPower, whose nine-year-old son Oliver had a running blade fitted when he was six, said she hoped that more than 500 children would benefit during the two years of the trial.

She said she believed it would make “a huge difference” to the children who took part.

She said: “These are specialist activity limbs that are not normally available on the NHS.

“If you have a child who has an amputation or a congenital limb disorder, as a parent… not to be able to provide them with what they need to participate in as normal a childhood as possible is very, very hard.

“This is about inclusion and activity. Not all of our children are going to be Paralympians, but they all need to have an active childhood.”

She said the fund was helping one girl who wanted a prosthesis that would allow her to dance and “go up on her points”.

One concern is that if DH decides not to renew the fund next year, children that have benefited from the prostheses could be left without replacements when they grow out of them.

But Bauert said: “What we have got to show is that there is a demand and it is needed.

“As a mum of a prosthesis-wearing child who wears a blade, I am hopeful and very optimistic that with the right research and evidence we can show the government it is needed and required for these children.

“My little boy got his blade when he was six and it changed his life completely.

“It gave him confidence at school, with friends, he joined the rugby and football clubs, his confidence just grew. ”

Richard Whitehead, a double leg amputee and double Paralympic 200 metres champion, said: “Having run thousands of miles on prosthetics myself I’m delighted to see the next generation take their first steps in experiencing the freedom of running, whether just for general enjoyment or towards achieving their own Paralympic ambitions.”

Hunt said: “Team GB [sic]* surpassed everyone’s expectations at last year’s Paralympics and this investment will ensure the next generation of children who have either been born without a limb or who have lost a limb will be able to lead an active life.

“It’s wonderful that the first children are now receiving their blades and that they will be able to reach their sporting potential – I hope some may even be selected in the future as members of Team GB [sic]. ”

*Britain’s Paralympic team is known as ParalympicsGB. Team GB competes in the Olympics

12 January 2017

 

News provided by John Pring at www.disabilitynewsservice.com