Activist joins former Labour minister in backing call for national audit

A leading disabled activist has joined a former Labour minister in backing calls for a national audit to discover how many people with learning difficulties have been abandoned in institutions far from their original homes.

Disability News Service (DNS) called for an audit in the wake of this month’s publication of a serious case review (SCR) into the “appalling and systematically brutal” abuse that took place at Winterbourne View, a private hospital for people with learning difficulties.

John Pring, editor of DNS, first suggested a national audit in 2003, and repeated the call last year in his book Longcare Survivors: The Biography of a Care Scandal, which details his 17-year investigation into the institutional abuse of adults with learning difficulties at the Longcare homes, near Slough.

Last week, the Care Quality Commission (CQC) backed the idea of an audit, and said too many people were living “in services away from their families and homes”.

Now Gavin Harding, co-chair of the National Forum of People with Learning Difficulties, has also backed the call for a national audit.

He said it was time the government started looking closely at how people with learning difficulties were supported.

He said: “Without a real commitment to change, Winterbourne View will happen all over again. I fear that only a death will prompt the government to take decisive action.”

He said the forum believed social services and health authorities often acted too quickly in sending people with learning difficulties to services outside their local area, particularly with young people.

Slough MP Fiona Mactaggart, a former Labour health minister, who played a leading role in securing an inquiry into the Longcare abuse scandal, has this week written to Paul Burstow, the Liberal Democrat care services minister, calling on him to act urgently.

She said: “For decades it has been clear that vulnerable people who are cared for a long way from family or responsible adults can be forgotten or ignored and thus be at far greater risk of abuse.”

She added: “I am very glad that the CQC has now added its voice to those of us who have called for action on this issue, but the government continues to find reasons to delay.

“It must act now. When people are in public care we the public must take responsibility for their well-being and safety, and unless someone knows where they are we are unlikely to be able properly to protect them.”

Steven Rose, chief executive of Choice Support, which provides support services for people with learning difficulties, said: “People are far more at risk in out-of-county placements because they are isolated from friends and family and far less likely to receive monitoring visits from local authority care managers.

“They often can’t speak up effectively for themselves and those who have their interests at heart are often hundreds of miles away.”

He said that, once people had been placed in such institutions by local authorities, it was often a case of “out of sight, out of mind”.

Rose, a leading campaigner for the rights of people with learning difficulties, added: “If we consider ourselves a civilised society where human rights are upheld then we need an audit of out-of-county placements now to establish the scale of the problem, followed by swift action that will lead to the closure of institutions where vulnerable people are inappropriately placed.”

Margaret Flynn and Vic Citarella, the authors of the Winterbourne View SCR, also backed the idea of a national audit, but said it must be as part of a “whole system check which leads to a clear plan to take action”.

They said it was time to look at the “imposed odysseys of young people and adults with learning disabilities and autism” and said there was a “compelling case for adopting a local model of commissioning [services] which is shaped by young people and adults with learning disabilities, their families and advocates”.

In his book, Pring raises concerns that over the last 30 years, thousands of people with learning difficulties appear to have been sent to live in institutions many miles from their original homes.

It is feared that many of them, often former patients of the old long-stay hospitals, have been abandoned in their new homes, without follow-up visits to check on their welfare, either from social workers or family members.

The Department of Health has suggested that it is considering the issue of out-of-area placements, but will not comment until its final report on Winterbourne View is published later this year.

23 August 2012

News provided by John Pring at

DisabledGo’s latest access guide launches in Hastings!

Hastings Borough Council are the latest council to work in partnership with DisabledGo to provide a fantastic resource for anyone who wants to know more about disabled access across Hastings and St Leonards.

The guide, launched on Wednesday 22nd August thanks to Hastings Borough Council and the Access For All Group covers over 500 venues across the area.

DisabledGo surveyors have visited every venue featured in the guide collecting information to a set standard, developed in conjunction with disabled people. The guide details accessibility to buildings and venues across the borough giving specific information such as the height of table’s dimensions of toilets or the positioning of fixtures and fittings.

Cllr Kramer Lead member for equalities said:

“The access guide should make a significant difference to disabled people who are visiting, living or working here. It means people can make informed decisions on where they want to go which is a major equalities issue.”

“The website is free to use and you don’t need to register. You can find detailed information about access to all kinds of places including cinemas, hotels, hospitals, colleges, sports grounds, restaurants, council offices, parks, tourist attractions, in fact the list goes on and on!”

Rosemary Iddenden, Chairman Hastings Disability Forum said:

“This is a major step forward to giving disabled people the opportunity to decide prior to going out whether the level of access that is available at their chosen destination will meet their needs”.

The online guide will provide benefits for business too, helping them reach more customers by publicising the access they offer. All businesses that take part also receive Disability Awareness Manuals, designed as a 20 minute introduction to disability and access.

The website not only gives information on access but it can also be used to find a job, catch up on the latest disability news, advertise events, post articles and join discussions on the forum.

Shrinking social stigmas with mental health support

The stigma of mental health, once a sticky subject kept at arms length or brushed under the carpet, is fast becoming a less prevalent in day-to-day life. While there are a huge number of support networks in place, it all boils down to the endless hard work and dedication of mental healthcare professionals, support and love from friends and families, as well as a wider general understanding of the needs of those who have mental health problems.

People are becoming more aware of specifics and details surrounding mental health issues, and it’s very likely that they themselves have been affected by it in some way, either through a family member, loved one or acquaintance. In fact, one merely has to look to the tabloid news to see examples of celebrity mental health issues being covered and respected. In short, it’s encouraging.

Mental health support groups and charities all seek to emulate this behaviour and, indeed, set their own shining examples, though the assistance they provide differs greatly depending on the individual needs of the people seeking help. Family, friends and professionals in the field of mental healthcare all make personal investments and contributions to the relationships that mean so much to the lives of those with mental health problems. They recognise that tip-toeing around any issues isn’t helpful. Dealing sensitively and thoroughly with their needs, talking about them, engaging with them, is what makes all the difference.

The end goal is always to give people suffering from mental health issues the independence and confidence to return as a valued part of their respective communities. Shying away and become remote simply isn’t an option, which is why many mental health support networks also offer residential programmes to help integrate people back into a regularly fulfilling lifestyle.

It’s also a popular idea to combine these residential programmes with visits from outside groups, charities and schools, in order to highlight the humanity of mental health. By bringing different people together to discuss openly the issues at hand, the fear and desire to keep it at arm’s length is turned on its head. In fact many take it as an excellent opportunity to come back and take on some volunteer work, which then goes on to add an extra sense of value to those depending on mental health support networks.

Click the link below to find out more about what mental health support can offer:

London 2012: Practice makes nearly perfect for Heathrow on busiest day

Months of planning and investment in access improvements appear to have paid off for Heathrow Airport as it welcomed more than 2,000 athletes and officials on its busiest arrivals day for the London 2012 Paralympics.

Airport bosses said about 430 Paralympic wheelchair-users arrived at the airport on Wednesday (22 August), including members of teams from the USA, Canada, Russia, Australia and Thailand.

Mark Hicks, Heathrow’s head of special assistance, said it had been a “fantastic day” and the airport had “exceeded my expectations”.

But he said what the airport had done was not “ground-breaking”, but a result of hard work and listening to disabled customers.

It has also worked with the disabled children’s mobility charity Whizz-Kidz, which had audited the airport’s facilities.

The airport said its investment in access improvements ahead of the games – which included new lifts for bringing wheelchairs up to and down from aircraft, new ramps, five new buggies for transporting disabled passengers through the airport, and three new accessible toilets – would leave a “lasting accessibility legacy” at Heathrow.

But a new onsite wheelchair repair service, available throughout the London 2012 period and mostly targeted at mobility equipment damaged in transit, will not remain within the airport after the Paralympics are over.

Instead, airlines will be given a telephone number they can use to contact a company that specialises in repairs but is not based at the airport.

Hicks said the service had been used just once on Wednesday, to repair a puncture on an athlete’s wheelchair.

He said it was probably not going to be used enough to justify a permanent facility within the airport, although that could change in the future if there was enough demand and airlines agreed to fund it.

Hicks said feedback from airlines, ground-handling crews and Paralympians themselves on Wednesday was very positive.

On one Air China flight there were 40 wheelchair-users, but airport staff managed to help them all off the aircraft within about 30 minutes.

Hicks said the airport had spoken to current and retired Paralympians and other disabled passengers, and had held more than 70 test events to “practice and practice” for coping with the Paralympics.

He also visited the Parapan American Games in Mexico last November – which hosted 1,300 athletes from 24 American countries in 13 Paralympic sports – to watch how Guadalajara International Airport dealt with the arrival and departure of so many disabled passengers.

The only problems reported on Wednesday, he said, were a couple of athletes’ wheelchairs that failed to arrive because of problems at other airports.

He would not say which teams were affected, but said Heathrow lent the athletes temporary wheelchairs, while their own equipment was expected to arrive and be delivered to the athletes’ village within 24 hours.

News provided by John Pring at

Government could face court action over ILF closure

The government looks set to face legal action from disabled people over its decision to scrap the Independent Living Fund (ILF).

The case would be the latest in a series of high-profile judicial reviews of decisions by government departments and other public bodies to slash services and spending due to the coalition’s deficit reduction plan.

The Department for Work and Pensions (DWP) is consulting on the proposed closure of the ILF, which will see funding passed to local authorities and the devolved administrations in Scotland, Wales and Northern Ireland.

But activists say the plans to close the ILF – a government-funded trust which helps about 19,700 disabled people with the highest support needs – are a huge threat to disabled people’s right to independent living.

They say the money will not be ring-fenced when it is passed to local authorities, with the government’s consultation paper offering no details on how councils will be able to meet the extra costs of disabled people with high support needs who previously received ILF money.

Inclusion London now wants to hear from ILF-users who are eligible for legal aid and are interested in challenging the government’s plans and its consultation process through the courts.

Tracey Lazard, chief executive of Inclusion London, said the closure of the ILF was “a massive threat” to disabled people’s right to independent living.

She said the cost of running the fund was far lower than the comparative cost of arranging support through councils, while the need to give disabled people “choice and control” over their support was “still not embedded” within local authorities’ policies.

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London 2012: Games could face legal action for ‘failing disabled parents’

The organisers of London 2012 could soon be facing an embarrassing legal action, over their failure to help disabled parents sit with their children to watch Paralympic events.

As the first 60 members of the 300-strong ParalympicsGB team arrived in the athletes’ village this week, and with the opening ceremony just six days away, the London 2012 organising committee LOCOG appears to have made no effort to resolve the concerns of disabled parents planning to attend the games.

Disabled actor Melissa Chapin has been trying to work with LOCOG for the last fortnight to resolve concerns that she and other wheelchair-using parents with Paralympic tickets will not be able to sit with their children and friends.

She has been asking LOCOG to take steps to ensure that more wheelchair-users who bring their children with them to venues such as the ExCeL centre – which has mostly unreserved seating – will be able to sit next to them.

She has tickets for two days of competition at Excel – which is hosting sports such as sitting volleyball, powerlifting, table-tennis and boccia – on September 2 and 3.

On the first day, she will be joined by a wheelchair-using British Falklands veteran, her seven-year-old twins, and two personal assistants, but there is no guarantee that they are going to be able to sit together.

She has already been contacted on Twitter by 10 other disabled parents with similar concerns.

She believes LOCOG will not be able to rely on its volunteers – or “games makers” – to resolve problems on the day, because they will be swamped by disabled parents with similar seating needs.

Chapin has also pointed out that LOCOG stopped wheelchair-users from buying tickets through its website last November, forcing them instead to use an 0844 telephone number, as reported by Disability News Service.

She said this had made it impossible for disabled parents to buy tickets for themselves and their children.

LOCOG has so far refused to work with Chapin to find a solution to her concerns, or to comment on the issue to Disability News Service.

Chapin said: “It is becoming a human rights issue. It is almost impossible to make me crack, but the cracks are starting to show. The twins couldn’t believe this was happening to their mum in this day and age.”

She believes LOCOG is breaching the Equality Act and the UN Convention on the Rights of Persons with Disabilities.

Meanwhile, LOCOG has struggled to explain why it chose four of the most inaccessible spots in the United Kingdom to light its four Paralympic flames.

The flames were lit by groups of scouts at the summits of the highest peaks of Scotland, England, Wales and Northern Ireland.

The four flames are being transferred to the four capital cities, where they will be the focus of a day of “flame celebrations”, before they are brought together into a single flame at a ceremony in Stoke Mandeville. A 24-hour relay will then take the single flame to the opening ceremony in east London.

A LOCOG spokesman said the idea of scaling the four peaks was about “showing what people can achieve”, and that they had “wanted to do something different and unique rather than replicate the Olympic torch relay”.

He said the idea would have come from the “creatives” in LOCOG’s torch relay team, but he said: “I don’t know specifically who had that idea.”

He added: “Unfortunately it was not going to be accessible to everybody but we tried to ensure that all the groups involved had a mixture [of disabled and non-disabled people].”

He said he believed that three of the mountaineers who took part in the flame-lighting events and “at least two or three” of each of the four groups of scouts were disabled people.

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Disabled prisoner’s life in the balance as Prison Service ‘refuses to provide proper care’

Prison authorities have been accused of risking a disabled man’s life by failing to provide the 24-hour specialist care he needs while serving a prison sentence for drug smuggling.

Daniel Roque Hall, from north London, was stopped by UK Border Force officers at Heathrow airport last November with almost three kilogrammes of cocaine hidden in his wheelchair.

Roque Hall is a full-time wheelchair-user and at home has a 24-hour care package. He experiences pain and muscle spasms, fatigue, heart problems, diabetes, and difficulty with speech and swallowing, as a result of the life-limiting condition Friedreich’s ataxia (FA).

But since he began his three-year sentence at Wormwood Scrubs prison in June – after the governor assured the judge his prison could provide the support Roque Hall needed – his family say he has received nothing more than basic care.

They are seeking a judicial review of the decision to keep him in prison, but a high court judge has already decided in an interim ruling that Roque Hall is not allowed access to his own specialist doctors.

Roque Hall usually carries out exercises – with the aid of a support worker – that help him maintain muscle strength, ease his pain, and prevent further deterioration to his health.

But he has apparently been denied access to any exercise equipment in the prison hospital wing, where he is being kept.

His mother, Anne Hall, said: “He has lost a huge amount of muscle mass. His speech is much less intelligible and his breathing is much worse.”

She said her son “is scared he is going to die” in prison, while his GP is concerned that the lack of care in prison will “result in Daniel’s demise”.

Hall said: “He cannot survive in a place like that. They have no idea of basic disability awareness. He needs 24-hour care. He has no quality of life and it is deteriorating. He is in danger of dying.”

In a statement, the charity Ataxia UK said Roque Hall had been given a prison sentence and “not a death sentence”, and added: “Daniel’s balance, co-ordination and mobility is already significantly compromised by his FA, and it is vital to his future welfare that he is provided with necessary care.”

The charity said the symptoms of his condition “require round-the-clock support to sustain safety and quality of life”, while it is “essential that specialist services, appropriate to the individual’s care needs, are both fully available and in place”.

It added: “Without these services in place, health and wellbeing – both physical and emotional – will be considerably compromised as time passes.”

A Prison Service spokeswoman said: “We don’t comment on individuals.”

She added: “We have a duty of care to those sentenced to custody by the courts. As part of that duty of care, we ensure that prisoners have access to the same level of NHS services as those in the community.”

When asked by Disability News Service (DNS) whether the Prison Service would discuss the case if Roque Hall gave his permission for it to do so, the spokeswoman repeatedly refused to comment.

Central London Community Healthcare NHS Trust said it was “disappointed with claims of sub-standard care as we believe that we provide good quality care to anyone detained at HMP Wormwood Scrubs”.

UPDATE: In the early hours of this morning (Friday), Anne Hall was called to University College Hospital, where she was told her son was seriously ill. He had been taken there with heart problems (tachycardia, a heart rate disorder) two days earlier. He is currently in the critical care unit. She said she found him “emaciated, barely able to speak and barely able to recognise me”. Hall told DNS that she had been telling the prison “for weeks” that her son “must be having tachycardia and he needs to be taken to hospital to be managed and they refused”.

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Nicklinson court ruling means assisted suicide is set for parliamentary return

Anti-euthanasia campaigners have welcomed a high court decision to reject the legal bids of two disabled men who want to loosen the laws on euthanasia and assisted suicide.

Tony Nicklinson, from Wiltshire, was seeking to give doctors the power to kill him at a time of his choosing, and has already said he will appeal the decision to the Court of Appeal.

Because he has “locked-in syndrome” and is paralysed from the neck-down following a stroke, he would need a doctor or another person to carry out the act.

Nicklinson wanted the court to declare that it would be legal – on the common law grounds of “necessity” – for a doctor to kill him, if sanctioned by the courts in advance. At present, such an act would be seen as murder.

The other man, identified only as “Martin”, also has locked-in syndrome following a stroke and wanted the director of public prosecutions to amend assisted suicide guidance to allow care or health professionals to help him end his life. He is also considering an appeal.

Lord Justice Toulson, one of three judges who heard the two cases, said they presented society with “legal and ethical questions of the most difficult kind” and that “their desire to have control over the ending of their lives demands the most careful and sympathetic consideration”.

But he said that allowing their claims would have “consequences far beyond the present cases”.

He said it was “not for the court to decide whether the law about assisted dying should be changed and, if so, what safeguards should be put in place” because these were “matters for Parliament to decide”.

Mr Justice Royce agreed, and said that for judges to change the law “would be to usurp the function of Parliament”.

Dr Kevin Fitzpatrick, of the disabled people’s organisation Not Dead Yet UK (NDY UK), which campaigns against legalising euthanasia and assisted suicide, expressed sympathy with both men’s situation but said he was “relieved” with the court’s judgment.

He said: “The judges have made a clear statement that the law cannot be changed in court. I would be very surprised if any appeal to a higher court had any different result.

“They found that in law there is no place for them to go, and that’s right.”

He said that although NDY UK was “deeply distressed” about the two men’s “despair”, it was “still very relieved that the courts found that the danger to other disabled people would be too great a risk to take”.

And he said he hoped that when parliament did consider the issue again – with the Labour peer Lord Falconer set to introduce another bill that would legalise assisted suicide – politicians would “understand all the complexity of the arguments and come to the same decision as the courts”.

In statements, Nicklinson said he was “saddened that the law wants to condemn me to a life of increasing indignity and misery”, while Martin said he felt “even more angry and frustrated now having had this court tell me that I cannot receive professional help to take control of how I might end my own life”.

The two cases are just the latest in a string of legal claims and parliamentary actions aimed at increasing pressure on MPs, peers and the courts to move towards weakening the laws on assisted suicide and euthanasia.

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London 2012: Royal Mail thinks again on Paralympic stamps

Royal Mail has agreed to produce individual stamps to mark every gold medal won by British athletes during the London 2012 Paralympics, following pressure from leading Paralympians and campaigners.

It had faced criticism last week when it emerged that it was intending to bring out just six stamps to mark the achievements of all the ParalympicsGB gold-medallists, even though it had produced individual stamps to celebrate every one of Team GB’s 29 Olympic gold medals.

It blamed “logistical” problems, claiming far more gold medals were expected from Britain’s Paralympians than its Olympians, and over a shorter time period.

But this week Royal Mail announced that it was “pulling out all the stops” to produce individual stamps for every British Paralympic gold medal.

Because it expects as many as 60 gold medals over the 11 days of the games, Royal Mail pledged to have the stamps on sale at 518 post offices across the UK within five working days of each victory, before rolling them out eventually to another 5,000 branches.

Rower Naomi Riches, who last week said individual stamps would be another step towards giving Paralympic athletes “as much credit for their achievements as Olympic athletes”, praised Royal Mail’s about-turn, which she said would make a win “even more special” and help raise the profile of Paralympic sport.

She had previously suggested to Royal Mail that athletes would be happy to “wait a little longer” for individual stamps.

But Riches said it was now important to focus on “what we need to do in the next two weeks to put ourselves in the best position to win that gold so that we can sit on the start line and know that we have done all we can and can put in our best performance”.

Royal Mail had already announced that it would paint an extra post-box gold in the home town of every British Paralympic gold medallist – just as it has done with the Olympics – and set up a £200,000 prize fund to be split between all gold medal-winners, which is believed to be a similar amount to its Olympic fund.

Julie Newman, acting chair of the UK Disabled People’s Council, who was critical of the original decision not to produce individual stamps for Paralympians, praised the “very impressive” part that Riches had played in persuading Royal Mail to change its mind.

She said it was important that Paralympic athletes themselves had played a part in over-turning the decision, because “they are the role models, the ones who carry the legacy and who in 20 years’ time are going to be talking about the fact that their faces were on the stamps, inspiring the next generation”.

She said the amount of public support for the idea of individual stamps had been “overwhelming”.

Mish Tullar, Royal Mail’s director of media relations, said: “Following the success of our Olympics gold medal stamps and with clear public demand for individual Paralympic gold medal stamps, and from our Paralympians themselves, we’re pulling out all the stops to deliver these too.”

Andrew Hammond, managing director of Royal Mail Stamps, said the Paralympics gold medal stamps programme would be “the greatest logistical challenge in stamps production ever undertaken by any postal administration”.

The British Paralympic Association, which had welcomed Royal Mail’s original plans for just six stamps, said it was “delighted that the offer has been increased”.

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London 2012: Half of torch relay participants will not be disabled people, says LOCOG

Only about half of those taking part in this month’s Paralympic torch relay will be disabled people, organisers have confirmed.

An initial analysis of participants whose stories were included on the London 2012 website – carried out by Disability News Service – had suggested that only about two-fifths of those chosen to take part would be disabled people.

That figure appears to have risen slightly as the final selections of participants were made, although LOCOG, the London 2012 organising committee, does not yet have final figures.

A LOCOG spokesman said that “at least half” of the participants would be disabled people, but that the relay was “never about setting a target” but “celebrating the human endeavour of Paralympians”.

He added: “We are still celebrating the fantastic people who are involved in the Paralympics, but it is not necessarily that the person carrying [the torch] is a disabled person.

“We think we have got a really good mix of stories that will make a celebration of the Paralympics and Paralympic values and we are very happy with the mix that we have got.”

He was speaking as LOCOG revealed full details of the torch relay’s 87-mile route.

Many of those taking part have been nominated for fund-raising or other charity exploits, while there will also be scores of representatives of the three “presenting partners” – London 2012 sponsors – who appear to have been picked only because they work for those companies.

Those nominated for the torch relay are supposed to embody the Paralympic values of “courage, determination, equality and inspiration”.

Channel 4 has already been criticised for its “absurd” decision to choose five non-disabled people – and not a single disabled person – to take part in the relay.

The three “presenting partners” – Sainsbury’s, Lloyds TSB and BT – have each chosen about 140 people to take part in the relay, with the other 150 or so being selected by bodies linked to the Paralympics itself and other London 2012 sponsors.

LOCOG this week published full details of how the Paralympic flame will be created and how it will make its way to the Olympic Stadium for the opening ceremony on 29 August.

Four separate flames will be created by disabled and non-disabled scouts at the summits of the highest peaks of Scotland, England, Wales and Northern Ireland.

These four flames will be taken in lanterns to the four capital cities for separate one-day festivals, and then to Stoke Mandeville Stadium, the national centre for disability sport and the spiritual home of the Paralympic movement, where they will be “united” at a ceremony.

A 24-hour relay will begin at the stadium at 8pm on 28 August, which will see the flame carried 92 miles through Buckinghamshire, Hertfordshire and the capital’s six London 2012 “host” boroughs, before arriving at the Olympic Stadium for the opening ceremony.

During the 24 hours, the flame will visit landmarks such as the National Spinal Injuries Centre in Stoke Mandeville, Lord’s cricket ground, London Zoo and Tower Bridge.

News provided by John Pring at