Apr 302013

If you can judge a nation by how it treats those in most need, the judgement on this nation is damning. Those with the highest needs are effectively being attacked by a government for a circumstance they had no choice in: being disabled.

It is a damning indictment of this government that they have launched attack after attack on disabled people leaving them without support and removing income. The proposed closure of the Independent Living Fund (ILF) is the latest in that assault.

Five severely disabled people whose right to live independently in the community and who face having their lives trampled on by a decision which has never been discussed let alone voted on in parliament have vowed to carry on their legal fight against the callous Coalition government’s proposed closure of ILF.

While Conservative MPs around the country continue to churn out platitudes that their party will protect the ’most vulnerable’ the reality of what their ministers are actually doing is far different. The loss of the Independent Living Fund will have disastrous consequences for disabled people with high support needs and as DWP and Local Authorities have said will result in people being forced back into care homes or left in danger in their own homes.

How many will have to be abused or die through neglect before society takes this threat seriously enough to say this is a cut too far? Anyone of you could become disabled and need this level of care to keep living in your community or at home with your family and friends. This is not about party politics this is about justice, morality and dignity. It is about the right to continue to have a life worth living if you do become disabled at some point in your life.

All five will appeal the decision handed down in the High Court on April 24th claiming that the government failed to meet its Public Sector Equality Duties when carrying out what they claim was a flawed consultation process.

DWP have previously said that the ILF fund was unsustainable. They fail to clarify as part of the consultation if there will be any guaranteed on-going extra funding devolved to local authorities to take over the additional costs of meeting people’s care and support needs after 2015. Something which could be a slap in the face for already hard pressed Local Authorities whose budgets are already being squeezed by a further 28% and who will have to implement these cuts.

If, like us, you think its wrong that disabled people (8%of the population) bear 29% of all cuts and that disabled people with severest needs (2% of the whole population) bear 15% of all cuts[i]-

Please support the five and write to your MP to say this is a cut too far.

Find your MP

[i] ‘A Fair Society?’ Centre for Welfare Reform, January 2013

Apr 302013

Barnet Alliance for Public Services


‘One Barnet’ Judicial Review – the fight against undemocratic outsourcing goes on!

Barnet Alliance for Public Services (BAPS) supported Barnet resident Maria Nash’s application for

Judicial Review of Barnet Council’s ‘One Barnet’ outsourcing programme and so, naturally, is disappointed at Mr Justice Nicholas Underhill’s judgment announced today. The Barnet Alliance will support Maria should she decide to appeal.

We understand that Barnet Council has agreed not to go ahead with the NSCSO contract for the short time it takes for the opportunity for appeal to be explored. We welcome this sensible delay.

During this hearing Barnet Council relied on the technical grounds that the JR application had not been made in time. Their defences against the substantive grounds for the application – particularly their failure to consult residents on what is an enormous change to council services and to the way they are governed – were extremely weak and we feel that the arguments aired during the hearing and reflected in the judgment given today vindicate the decision to apply for JR.

The judgment finds that “the Council never set out to consult about its outsourcing programme at all”. He says: “if the application for judicial review had been made in time I would have held that the Council had not complied with its obligations under section 3 (2) of the 1999 Act in respect of the decisions taken in 2010/11 to outsource the performance of its functions and services, covered by the proposed

NSCSO and DRS contracts.”

The legal route is just one way to oppose One Barnet: Barnet Alliance’s campaign has included marches, petitions, lobbies, questions at Council meetings, and more. Despite today’s setback, Barnet Alliance’s campaign against One Barnet will continue. BAPS coordinator Tirza Waisel said:

“The One Barnet programme continues to be a disaster for Barnet. The consultant spend is enormous, there are no discernible savings yet, Council staff morale is rock-bottom, and jobs are hemorrhaging out of the borough  this decision gives the green light for the Council to sign the NSCSO contract with Capita which will see up to 400 local jobs transferred to Capita centres across the UK. In the case of Your Choice Barnet, jobs have been degraded to the detriment of vulnerable service users. This is just the start. If the looked-for savings from One Barnet do not materialise, there will be even more cuts to the vital services that Barnet residents rely on. Barnet residents simply cannot afford the One Barnet programme.

“We are encouraged that the court has agreed with us that Barnet Council have failed to consult residents over measures that add up to the wholesale remodelling of local government. Today’s judgment, although a setback, fundamentally changes very little. We will support Maria Nash if she decides to appeal, but, in any case, our campaign against One Barnet outsourcing and for democratically accountable public services will continue because it has to  our fight is just and goes on!”


Notes for editors

1.Barnet Council’s One Barnet programme includes the letting of two large contracts: Capita has

Barnet Alliance for Public Services

been chosen to run the New Support and Customer Services Organisation (NSCSO) contract with Barnet Council, worth at least £320 million over 10 years and advertised in the Official Journal of the European Union as worth between £600 and £750 million. A second contract covering Development and Regulatory Services (DRS) worth £275 million over 10 years is being bid for by Capita Symonds and EC Harris.

2.Barnet Alliance for Public Services (BAPS), formed to defend and improve public services, supported Maria Nash’s legal challenge. Maria is not a member of BAPS.

Contact: Barnet Alliance tel: 07534 407703 – http://barnetalliance.org;

Barnetalliance4publicservices@gmail.com; @barnetalliance

Apr 252013

Man Jailed After Comments Made In Atos Assessment

atos-killsA Nottingham man has now been held in custody for two weeks after he was accused of “threatening behaviour” due to comments he allegedly made during his Atos benefits assessment.

Steve Topley is a 49 year old father with multiple serious health problemswho was required to attend a Work Capability Assessment with the notorious IT firm Atos – the company responsible for stripping benefits from hundreds of thousands of sick and disabled people.  During the process Mr Topley made some comments about someone not present at the assessment.  His family say these comments were misunderstood and were in response to questions from the assessor about his personal life.

These comments led to Atos staff calling the police and Mr Topley was asked to attend Queens Medical Centre (QMC) in Nottingham.  When he refused to do so he was arrested.  At QMC he was de-arrested and received a mental health assessment but no reason was found to detain him under the mental health act.  He was then re-arrested and taken in handcuffs to Nottingham police station where he was later charged.

He has now been refused bail twice in closed courts which his family were not permitted to attend.  His sister Gina Topley, who says the family are being kept in the dark about the legal process, has said:

“My brother has not been given any opportunity to speak and give his side of the story to a judge and he was not offered an appropriate adult to accompany him when he was arrested.”

His family have not been allowed to visit him in prison and have raised concerns that his medication may not be being administered properly.  Mr Topley will face another appearance in a closed court tomorrow (Friday 26th April) and there are major fears that he will be remanded once again pending psychiatric reports.

His family and supporters have called a demonstration outside the court tomorrow calling for his immediate release.

Meet outside Nottingham Crown Court on Friday 26th April from 9.30-11.00am – please help spread the word.  For more details and the  latest news visit:http://freestevetopley.wordpress.com/

reposeted from Johnnyvoidwordpress –  twitter @johnnyvoid

 Posted by at 16:35
Apr 242013

R (Bracking) and Others v Secretary of State for the Department of Work and Pensions

The legal challenge to the Government decision to close the Independent Living Fund


This claim for judicial review was brought by five disabled claimants to challenge the decision of the DWP to close the Independent Living Fund in 2015. The fund has been in existence since 1988 and provides grants to severely disabled people to enable them to live independently.  The ILF enables disabled people to control the way they use the funds and currently provides support to almost 20,000 of the most severely disabled adults in the country. Many ILF users receive some support from local authorities to help with their basic care needs but also receive funding from the ILF that enables them to live more independently.  Some only receive funding from the ILF.


In 2010 the fund was temporarily closed to new users and in December 2010, without any consultation, the Government announced that the fund would remain permanently closed to new applicants. It also announced that it would carry out a formal consultation on the future of the ILF in 2012.


The consultation ran from July to October 2012. This claim was started before the consultation ended. The Claimants argued that the consultation itself was unlawful. The main reasons were: (1) that the consultation paper did not give enough information for people to be able to comment fully; and (2) that the DWP had not properly assessed the impact of closure on those disabled people who were currently receiving ILF support.


The consultation paper proposed that ILF funds would be ‘devolved’ to local authorities after 2015 so that the people currently receiving ILF support would, in future, be assessed and supported by social services departments and only receive funding for care from them.  However, it did not say how much funding would be ‘devolved’ or if the funding would be ring-fenced (to ensure that it was spent on supporting adults with care needs).  Further, it did not give enough information about the way social services assess and support disabled people.


The DWP also said that it could not assess the impact on disabled people until after the consultation had ended.  It said that it would publish a full impact assessment when it made its final decision.  The Claimants argued that this was unlawful and that the DWP had enough information to carry out a broad assessment of the impact and to set this out at the beginning of the consultation.


Under the Equality Act 2010 public bodies, including government departments, must have “due regard” to certain equality principles when it makes decisions and develops policies. This is the “public sector equality duty” and it applies when decisions and policies are likely to affect a group of people with a protected characteristic.  Disability is a protected characteristic.   Under this duty, public bodies


must have due regard to the need to advance equality of opportunity for disabled people. This duty has three elements: the need to remove or minimize disadvantages suffered by disabled people, the need to take steps to meet their special needs and the need to encourage disabled people to participate in public life.


Because of how important the ILF has been in the lives of those it has supported, and particularly the way it has enabled severely disabled adults to live independent lives and to undertake education and training, to work and to play a full part in their communities, the Claimants argued that there was a very strong duty on the DWP to take steps to find out how the proposal would affect ILF users and other disabled people. The Claimants’ case was that the DWP had acted unlawfully in failing to do this.


After the claim had been issued the Government announced, in December 2012, that it had decided to close the fund.  It also made clear that whatever funding may be ‘devolved’ to local authorities would not be ring-fenced.1 The claim was therefore amended to challenge not only the consultation process but also the decision to close the fund. The challenge was still focused on the process of the decision- making: the failure to consult lawfully and the breach of the public sector equality duty when making the final decision.


During the proceedings, the Claimants discovered a number of things that had not been made clear in the consultation:


  • other options, such as postponing closure until after 2015 had been considered;


  • the DWP had estimated the costs of closure at £39 million;


  • that one, central, reason for recommending the closure of the ILF was that the money currently spent by the ILF on the support packages for its users would be unlikely to be available to the DWP after 2015.


So, although the DWP had presented the decision as being purely about reform and streamlining the way funding was to be distributed, in reality, this was about cutting the funds available to support disabled people. The Claimants argued that this should have been made clear in the consultation.


The Equalities and Human Rights Commission intervened in the case to advise the court on how the public sector equality duty should have been discharged by the



1 In the Government’s published response to the consultation it was stated that “in their response to the consultation, most local authorities said they would be strongly opposed to a ring fence around this funding” but this was completely untrue. Not one of the local authority responses obtained by the Claimants under the Freedom of Information Act expressed opposition to ring fencing; 33 out of 80 were in favour of ring-fencing or suggested it should be considered and several authorities expressing qualified support indicated that their position depended on whether the funding would be ring fenced. The rest made no comment about ring fencing.


DWP.  In their submissions, it was pointed out that the public sector equality duty is part of how the Government meets its international obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).


The judge heard argument for one and a half days and decided that the DWP had carried out an adequate consultation and had not breached the public sector equality duty: he dismissed the claim.  A written copy of the judgment is available on the websites of the solicitors instructed: Deighton Pierce Glynn at www.deightonpierceglynn.co.uk and Scott-Moncrieff & Associates at www.scomo.com.


The judgment fails to explain the judge’s reasons for reaching the conclusions he did or to set out the evidence he relied on to reach those conclusions.  The judgment is therefore hard to follow.  In relation to the consultation process, the judge specifically found that there was enough information for people to engage in the process in a meaningful way.  He also decided that the information that had not been provided (about the costs and reasons for closing the ILF) did not make a significant enough difference to the consultation exercise to make it unlawful, though these would have been important issues for people to comment on.


In relation to the public sector equality duty, the judge decided that this had been brought to the attention of the Minister for Disabled People and therefore the duty had been met. He referred to a number of documents and information available at the time the Minister was making the decision.  However, none of these explained the duty properly or gave the Minister enough information to consider the specific elements of the duty set out above.

The Claimants are therefore seeking permission to appeal to the Court of Appeal. The Claimants are not just seeking to preserve the ILF for the existing users but want

the ILF to continue and for all young disabled adults to be able to apply so that they

can be supported to live independent lives.  It is with this goal in mind that they wish to pursue their legal challenge further: to ask the Court of Appeal to quash the decision that the ILF should close and to force the Government to think again about how it funds care for severely-disabled people so they can maintain their independence throughout their lives.




For further information (solicitors representing the Claimants): Deighton Pierce Glynn (Louise Whitfield)

8 Union Street

London SE1 1SZ                                   Tel:  020 7407 0007


Scott-Moncrieff & Associates (Diane Astin/Kate Whittaker) Office 7, 19 Greenwood Place

London NW5 1LB                                Tel: 020 7485 5588/ 07792 700825

Apr 242013

The Court of Appeal will be asked to over-turn the decision of the High Court in the judicial review brought by five service-users of the Independent Living Fund (ILF) of the Government’s decision to close ILF in March 2015. In its judgment handed down today, the court held that the consultation process concerning the closure had been lawful and that the DWP had met the public sector equality duty when deciding to go ahead.  All five claimants have begun an appeal against this ruling.


ILF provides vital support and funding to some 20,000 severely-disabled people in the UK to enable them to live independent and fulfilling lives.  The closure of the Fund will threaten their right to live with dignity and in many cases, their ability to work. The Claimants, represented by Deighton Pierce Glynn and Scott-Moncrieff & Associates, fear that without ILF funding and support, they may be forced into residential care or may end up unable to leave their homes.


The Claimants’ concerns over the consultation process relate to the failure by the DWP to explain the proposals properly: there was insufficient information to enable consultees to respond in a meaningful way. In addition, further information came to light as a result of the claim which revealed the DWP had not been open and candid in its approach to the consultation exercise.  The judge dismissed these points as having no impact on the lawfulness of the consultation exercise.


The public sector equality duty required the Minister for Disabled People to have due regard to the need to eliminate discrimination and advance equality of opportunity for disabled people but there was no evidence that she had specifically considered these issues when deciding to close the ILF and the impact this would have on disabled people. In its ruling, the court did not explain how it reached the conclusion that the Minister had met the statutory duty in the specific way required.


The Claimants therefore intend to pursue their appeal on the basis that the judge’s conclusions did not reflect the evidence before the court and that the reasons for ruling that the process was lawful were not properly set out. All five are adamant that the process was flawed and that the impact of closure will be devastating for very large numbers of severely-disabled people.  They see it as vital that the decision is quashed and the matter reconsidered on a fair and lawful basis.



Solicitors representing the Claimants: Deighton Pierce Glynn (Louise Whitfield)

8 Union Street

London SE1 1SZ                                 Tel: 020 7407 0007



Scott-Moncrieff & Associates (Diane Astin/Kate Whittaker) Office 7, 19 Greenwood Place

London NW5 1LB                              Tel: 020 7485 5588/ 07792 700825

Apr 212013

this is taken from kittyjoneswordpress.com and we hope it will be useful for people to know about.

Courageous Scottish nurse Joyce Drummond, who made a heartfelt apology to Atos assessment victims, has submitted evidence to the Scottish Parliament Select Committee on Welfare Reform.
I have a correspondence with Joyce, who was the subject of this article: www.dailyrecord.co.uk/news/scottish-news/nurse-makes-heartfelt-apology-after-1340838

Joyce has submitted evidence to the Scottish Parliament Select Committee on Welfare reform, which she forwarded to me this morning. I have edited where needed, and added to the text to make it easier to read. I’ve included the contents from Joyce’s notes in full.

I knew nothing about Atos when I joined, and left as soon as I realised that there was no way to fight from the inside.
I carried out Incapacity Benefit assessments, these were the forerunner to ESA assessments. I stated at my interview for the job that I believed in social inclusion and social justice.

I went for 4 weeks training in England. The training did not prepare me for what I was expected to do in real life.

The forms that are completed prior to assessment, I have recently found out, are opened by Royal Mail Staff. They are then sent for “scrutiny” where nurses decide whether or not a face to face assessment is required. I was not involved in this and do not know what criteria are used.

It is made clear throughout training and working that we are not nurses- we are disability analysts. Also, we do not carry out ‘medical assessments’ – we carry out ‘functional assessments’. We did not even need a diagnosis to carry out assessments. I had reservations around consent, as we were expected to assess patients – sorry, we didn’t have patients, we had ‘claimants’- who appeared to be under the influence of alcohol or other substances.

We were also consistently told that we did not make benefit decisions. The final decision was made by a DWP decision maker with no medical qualification. If our assessment was overturned at appeal we never knew about it. There was no accountability for assessments overruled.
Assessment starts on the day of your appointment with the HCP reading the form you complete when you applied for benefit. Remember that every single question you are asked is designed to justify ending your claim for ESA and passing you as “fit for work”. That is what Atos are contracted to do by the Government. This is not a genuine assessment, but rather, an opportunity for the DWP to take away your financial support, which you are entitled to.Things that are noted are :-

Did you complete the form yourself
Is the handwriting legible
Are the contents coherent.

These observations are already used in assessing your hand function, your cognitive state and concentration. Next under observation:-
Do the things you have written add up.
Does your medication support your diagnosis.
What tests you have had to confirm diagnosis. For example a diagnosis of sciatica is not accepted unless diagnosed by MRI scan.
Do you have supporting medical evidence from GP or consultants. If you do, it shows that you are able to organise getting this information.

This is also a hidden cost to the NHS. I believe that if ATOS request information there is a charge levied by GP’s. However claimants are expected to source medical evidence themselves. It uses valuable NHS time for medical staff to write supporting statements.
There were no hidden cameras, at least in Glasgow, to watch people arriving for assessment or sitting in waiting room. This may not be true in other areas.

When the HCP has read your form they input some data into the computer system. The assessment properly begins when they call your name in the waiting room. At this point they assess:-
Did you hear your name being called
Did you rise from your chair unaided, did the chair have arms or not
Were you accompanied – this addresses you’re ability to go out alone.
Were you reading a paper while waiting- looks at your concentration.
Did you walk to the assessment room unaided, did you use aids correctly. Did you navigate any obstacles safely- assessing sight.
The HCP will shake your hand when inroducing herself- are you trembling, sweating- signs of anxiety. Again note the constant scrutiny. The HCP will often ask on way to waiting room:-

How long you’ve been waiting- assessing ability to sit- both physically, and looking at your mental state.
How did you get here today- ability to drive, use public transport.
Assessment begins by listing medical conditions/complaints. For each complaint you will be asked:-

How long have you had it, have you seen a specialist
Have you had any tests, what treatments have you had
What’s your current treatment. Have you had any other specialist input eg. physiotherapy, CPN.

The HCP will use lack of specialist input/ hospital admissions to justify assessing your condition as less severe. Medications will be listed and it will be noted if they prescribed or bought. Dates will be checked on boxes to assess compliance with dosage and treatment regime. Any allergies or side-effects should be noted.
A brief note is made of how you feel each condition affects your life
A brief social history will be taken – who you live with, if have you stairs in your house or outside to your house.
Employment history taken – asking when you last worked, what you worked as, reason for leaving employment.
Typical Day – this is the part of the assessment where how you function on a day to day basis is used to justify the HCP decisions. Anything you say here is where you are most likely to fail your assessment. Along side this, the HCP records their observations.
Starting with your sleep pattern, questions are asked around your ability to function.

Lower limb problems- ability to mobilise to shops, around the house, drive, use public transport, dress, shower.
Upper limb- ability to wash, dress, cook, shop, complete ESA form
Vision- did you manage to navigate safely to assessment room.
Hearing- did you hear your name being called in waiting room.
Speech- could the HCP understand you at assessment.
Continence- do you describe incontinence NOT CONTROLLED by pads, medication. Do you mention it’s effects on your life when describing your typical day.
Consciousness- Do you suffer seizures- with loss of continence, possible injury, witnessed, or uncontrolled diabetes.
HCP observations include- how far did you walk to examination room, did you remove your coat independently, did you handle medications without difficulty, did you bend to pick up handbag.
Formal examination consists of simple movements to assess limited function.Things HCP also looks out for:-

Are you well presented, hair done, make-up, eyebrows waxed.
Do you have any pets – this can be linked with ability to bend to feed and walk.
Do you look after someone else – parent or carer- if you do this will be taken as evidence of functioning
Any training, voluntary work, socialising will be used as evidence of functioning.

This is not a comprehensive list, but gives you an idea of how seemingly innocent questions are used to justify HCP decisions.
Mental Health
Learning tasks- Can you use phone, computer, washing machine.
Hazards- Can you safely make tea, if claiming accidents- must have had emergency services eg fire service. Near miss accidents do not count.

Personal Actions
Can you wash, dress, gather evidence for assessment
Manage bills.

Observations made by HCP – appearance and presentation
Coping with assessment interview, abnormal thoughts, hallucinations, confusion.
Coping with change – ability to attend assessment, attend GP or hospital appointments, shopping and socialising.

More HCP observations:-
Appearance, eye contact, rapport, any signs/symptoms that are abnormal mood/thoughts/perceptions. Suicidal thoughts.
Coping with social engagement/appropriateness of behaviour – any inappropriate behaviour must have involved police
Ability to attend assessment, engage with assessor, behave appropriately.
Again this is not an exhaustive list, merely examples.
There are some “special cases”. Off the top of my head, exemptions from assessment include – terminal illness, intravenous chemotherapy treatment and danger to self or others if found fit to work (Regulation 29.)

At present to qualify for ESA you need to score 15 points. This can be a combination of scores from physical and mental health descriptors.
To qualify for the support group you must score 15 points in one section.
As long as you are claiming income – based ESA then your award can be renewed at each assessment, if you gain 15 points.

Contribution ESA lasts for 1 year only, unless you are in the support group. After 1 year in the support group, you may only get income based ESA if your household income is below a certain threshold. It makes no difference how long you have previously paid National Insurance.

For clarity, as far as I know in the real world, doctors carry out medical assessments, nurses carry out nursing assessments and physios carry out physiotherapy assessments. In the world of Atos, each of these separate professions are employed as disability analysts, carrying out functional assessments.
Nurses are employable for these posts if they have been qualified for at least 3 years, are registered to practice with the NMC, and have basic computer skills.
My interview consisted of-
Face to face interview with medical director and nurse team leader.
A written paper assessing a scenario, in my case someone with back pain
A 10 minute basic computer test.
In order to be approved as disability analyst I had to complete 4 weeks Atos disability training, reach a certain standard of assessment reports- as decided by audit of all cases seen (don’t know what criteria was) and finally approval to carry out WCA assessments from the Secretary for Work and Pensions.
In my opinion the money given to Atos and spent on tribunals should be given to NHS GPs. They are best placed to make assessments regarding patients work capability. They have access to all medical reports, past history, specialist input and know their patients. My concern would be what criteria the DWP would impose on GPs risking the doctor/patient relationship. GPs already assess patients for “fit notes”, which have to be submitted to DWP during assessment phase of ESA.

While I worked at Atos, sessional medical staff were being paid £40 per assessment, as far as I am aware. I have no idea of wages of permanent medical staff. Nurses were on a salary, which based on 10 assessments a day (Atos target) equalled around £10 per assessment. These are approximate figures but may give a clue as to why Atos are employing nurses rather than doctors.

Further information:-

Special exemptions from the 15 points criteria: Regulations 29 and 35.

Questions you may be asked at assessment: dwpexamination forum

How to deal with Benefits medical examinations: A Useful Guide to Benefit Claimants when up against ATOS Doctors

More support and helpful advice here: How to deal with Benefits medical examinations

Previous related article: After Atos

List of conditions judged suitable for assessment by neuro trained nurses/any health care profession: –
Prolapsed intervertebral disc
Lumbar nerve root compression
Slipped disc
Lumbar spondylosis
Lumbar spondylolisthesis
Lumbar spondylolysis
Cauda equina syndrome
Spinal stenosis
Peripheral neuropathy
Drop foot
Meralgia paraesthetica
Cervical spondylosis
Cervical nerve root compression
Nerve entrapment syndrome
Carpal tunnel syndrome
Trapped nerve
Brachial plexus injury
Essential Tremor

List of conditions judged by the DWP and Atos Healthcare as suitable only for assessment by doctors:-
Head injury with neuro sequelae
Brain haemorrhage
Sub Arachnoid Haemorrhage
Brain tumour
Acoustic Neuroma
Multiple Sclerosis
Motor Neurone Disease
Parkinson’s disease
Bulbar Palsy
Myasthenia Gravis
Muscular Dystrophy
Guillain-Barre Syndrome
Amyotrophic lateral sclerosis
Spina bifida
Fits (secondary to brain tumour)
Learning difficulties (with physical problems)
Bells Palsy
Trigeminal Neuralgia
Huntington’s Chorea
Huntington’s Disease


 Posted by at 17:24
Apr 202013

This week it’s been reported that a coroner has found that a 51 year old man has taken his own life after worrying about how he would survive after his benefits were stopped. Meanwhile, Betty Stevenson, chair of Edinburgh Tenants Federation, has said the bedroom tax would have a “terrible effect” on people with mental illness, which could lead to a spike in suicides.

I’m researching this and wider ideas of the impact of cuts on people with mental health problems for my New Statesman column.

Have the cuts had a serious effect on your mental health? This can be either if you had existing mental health problems (and they have worsened, for instance) or if they have since developed.

This is clearly a very sensitive topic but one, with your help, I hope to highlight. (If needed, stories can be given anonymously with no names being published.)

Please get in touch on frances.ryan18@btinternet.com (rather than leaving a message here as I would not want to miss anything). Many thanks, Frances Ryan.


 Posted by at 17:03
Apr 162013

If you missed it all -the Disability Action Alliance or DAA[i] has had a strange and tortured beginning. It was set up in 2012 to help with the new disability strategy. The merged organisation of RADAR, Disability Alliance and the National Centre for Independent Living (NCIL) AKA Disability Rights UK (DRUK) got the’ job’ of co-organising the DAA. This was a great surprise to all, not least the United Kingdom Disabled Peoples’ Council (UKDPC). The great surprise was that this ‘job’ hadn’t been advertised or put out for tender. After initial rumbles of shock and discontent DRUK said that they would not be paid for this ‘job’ so it didn’t matter, or words to that effect -and we all forgot about it.

Another issue was that this Alliance would include charities, presumably big disability charities as well as small ones, and private companies or corporations. This caused more rumbles of shock and discontent because some of us had been taught and still believed that any ‘disability movement’ was about disabled people leading it, was user-led and rights not charity based, we weren’t sure how to deal with this astounding corporate thing being added on either.  DRUK said DAA would be advising on government policy and would not supplant the role of disabled peoples’ organisations so it didn’t matter, or words to that effect -and we all forgot about it.

Then there was a flash new website called unsurprisingly: Disability Action Alliance. At the link if you want to have a look http://disabilityactionalliance.org.uk/ or join

A site with pictures, a bit government branded in style, but what can we expect.  The ‘About us’ section says:

During the development of Fulfilling Potential – Next Steps, the idea of a new way of working in partnership emerged and ODI agreed to set up the Disability Action Alliance.  Disability Rights UK agreed to convene the Alliance to ensure ‘nothing about us without us’ – so that disabled people’s voices and experiences drive change, locally and nationally.

The ODI or Office of Disability Issues (an adjunct to the DWP) also set up a network called the ‘Network of Networks’ in 2010 so that disabled peoples’ voices could drive change, locally and nationally’ with a pure base of 12 user-led disabled peoples’ organizations, which they then disbanded, unceremoniously, shortly after the development of Fulfilling Potential.  So the ‘nothing about us without us’ does ring a bit hollow, especially with the potential corporate business and big disability charities in the ‘us’ bit.

Maybe a more apt chant would be ‘something about us without us again’ led by Government departments, sorry ‘disabled peoples’ voices’

Alliance Declaration and Membership Agreement

There was some more shock and discontent over the DAA ‘membership agreement’ on the web site. For example the section states members must:

‘Respect the views of other members, and not represent their views unless they are given permission’

It is unclear what this means exactly, but it doesn’t sound particularly empowering to disabled peoples’ voices. Does it mean that a group cannot represent another groups views ‘unless they are given permission’? or that they cannot represent their own views? It all seems a bit defeatist to us. Also included is that members must:

‘Protect the integrity of the Alliance and not bring it into disrepute’

Again, what does this mean? Why would any group want to bring the alliance into disrepute? And what is the ‘protect’ element about?

We also see members must: ‘Not campaign or lobby in the name of the Alliance (this would not affect whether members campaign or lobby on behalf of their own organisations)’

Oh well, that’s good then and…in the spirit of incorporating others into the new world order, members must:

‘Identify existing groups/alliances/networks who may already be acting and could be engaged’

Already be acting….?

Anyway, the drive for members of the quango, sorry, new exciting network of disabled peoples’ voices was launched and anyone could join up, presumably providing they could understand exactly what the Alliance declaration and membership agreement actually meant. At the time of writing there are 102 members. As we seem to have waited so long to find out who they are let’s see if our anticipation has paid off…

Members of DAA so Far….

Members include some disability type organisations, plus: the Department for Works and Pensions, the Department of Climate and Energy Change and presumably the ODI. Also Lloyds bank is there and big charity Shaw Trust. There are a number of companies but no big names such as Atos or Capita which is reassuring, for the moment anyway; a couple of DIAL’s (taken over by SCOPE a few years ago), a regional unison, and a local council.

For those who filled out or took part in completing the consultation on the disability strategy (Fulfilling Potential), the outcome of the DAA is all slightly surreal. There we were with our disabled voices trying to affect change and here we are with a hotchpotch of unforeseen organisations who are going to talk about it-providing they get ‘permission to represent’ their? Our? the DWPs? Views-oh who really knows anything about what’s going on with this anymore?

There was more surreal stuff to come when the TUC Disabled Workers Committee were approached by the government to join the Alliance- eh? –‘approached by the government’ must have been some kind of an elongated typo on the TUC website there…but anyway they said no. Why did they say no?

TUC Disabled Workers Committee says no to DAA

According to a piece in Disability News Service and on the TUC website: the TUC disabled workers committee were approached by the Government-OK-so not an elongated typo- to join the DAA. They said no. According to the TUC web site, they said no because:

Disabled trade unionists feel very strongly that joining the DAA – an organisation recently set up by the Office for Disability issues to encourage groups representing disabled people to work together – would restrict the TUC’s ability to campaign against government policies that are affecting disabled people.

Representing disabled people? Does Lloyds bank really represent disabled peoples’ views or do the DWP or those other government departments?

No, we didn’t think so either. But Sean McGovern (chair of disabled workers committee) gets to the heart of the matter and maybe to the focus of the real disability strategy when he says:

The government has been attacking the living standards of disabled people for almost three years now and things are getting worse.

Unions are working with disabled people against these brutal and inhumane cuts, and are campaigning against the government’s unnecessary and damaging austerity drive.

The ATOS work capability assessments, the closure of the independent living fund, the switch from disability living allowance to the personal independent payment, and the bedroom tax – every single one of these changes is punishing and impoverishing disabled people and their families.

Joining this government-inspired alliance now would be to pretend that none of this is happening.

We want to see all disabled people and the organisations that represent them continuing to oppose government policy and not conned into becoming part of the problem rather than part of the solution.’

And this is exactly where any growth of a real disabled peoples’ led disability action alliance must be focused for anyone aware of what is really happening to disabled people under this government and its disability strategy

 You can join up at www.dpac.uk.net

We already have over 12,000 members and supporters, and not a government department in sight. You know it makes sense.

[i] Not to be confused with Disability Awareness in Action a user-led organisation

Apr 142013

UKUncut and DPAC posted a few ‘millionirres who cause misery’ eviction notices yesterday. They included Osborne, Freud and IDS. See the amount of bedrooms they have.


IDS – the man behind the hated bedroom tax tax – is a tenant of the landed gentry Fremantle family

living rent-free in a £2million aristocratic country house given to him for free by his father-in-law

Unlike the 660,000 families in social housing who are being forced to pay an average of £14 a week extra for a spare bedroom, three quaters of whom are disabled, he can live happily knowing he has to pay no rent or mortgage.

A very different type of housing benefit for him than for the rest of us

DPAC visted the IDS mansion and videos can be seen at the link below thanks to Kate, and more to come….



Apr 132013

Disabled activists are occupying the front garden of IDS millionaire’s mansion in Buckinghamshire.

An eviction notice has been pinned to his door.

Speakers are listing the Tory assaults on disabled people and the poor.

Pictures to follow shortly

Link to live coverage on UKUNCUT on twitter



 Posted by at 12:30
Apr 092013

Please be aware that ILF users in Northern Ireland have set up their own group to ensure that user input is included in the decision making process.  The independent NI ILF user group have already begun to liaise with local politicians and Health Trusts/Social Care Board and will be holding user consultations during May 2013 to develop some proposed solutions regarding ILF in Northern Ireland.

If you would like to get involved or just give your input and be kept up to date on the latest developments please to contact them on : ilf_users_ni@hotmail.co.uk “.

Apr 092013

action for rail

Meeting for MPs and campaigners
24 April, 1.30pm–3.30pm, Grimond Room, Portcullis House
With government and shadow transport representatives
The government and rail industry’s plans to find savings of up to £3.5bn will place up to 20,000 jobs at risk and entail the de-staffing of a large proportion of our trains and stations. Disabled passengers may suffer as a result.
Speakers from Transport for All, the National Pensioners Convention, Disabled People Against Cuts, rail unions and others will be invited to discuss their experiences of rail travel and the role that staff play in meeting their needs and to raise their concerns with MPs and government representatives.
RSVP actionforrail@tuc.org.uk

Download the flyer here: Action for Rail – Disabled and Older Passengers – 24 April 2012-1


Please also be aware of:

 Keep Staff on our Railways

Kings Cross Station Protest

4.30pm – 6.30pm

Wednesday 24 April 2013

Apr 072013

The campaign against the Bedroom Tax and other benefit cut is gathering strength and anger after 1 April.  50+ protests round the country on 30 March drew up to 26,000 people see Mirror report  and  BBC report 

As Ministers stoop to new depths in trying to stigmatise people claiming benefits, Benefit Justice is helping to build united protests and campaigns locally and nationally, linking disabled peoples organisations, tenants, trade union, Workfare and other groups and campaigners.

Action dates:

13 April UKUncut action against the Bedroom Tax – see ukuncut.org.uk  or www.facebook.com/ukuncut 

Haringay (North London)  1,000 Mothers march

15 April – details below

20 April Further Bedroom Tax protests are planned including: Cardiff, Corby, Edinburgh, Glasgow, Leeds, London, Kidderminster, Manchester, Plymouth, Redcar (more are likely so please check locally)

11 May Benefit Justice Summit2 at Central Hall Westminster

With Welsh Tenants Federation, Billy Hayes (CWU), John McDonnell MP, DCH, DPAC, Unite and PCS unions and Bedroom Tax/Benefit campaigns from across England, Scotland and Wales.  Sign up now: benefitjustice.wordpress.com and see leaflet here

See report of Benefit Justice summit 9 March at benefitjustice.wordpress.com

Watch opening opening session and some workshops

Please get in touch if you want more info or to pass on news and suggestions


Cap rents not benefits – Scrap the Benefit Cap protest – Mon 15 Apr, 8am-10am, Stratford
The benefit cap is due to start on 15th April in Haringey, Enfield, Bromley and Croydon, before being rolled out nationwide in the summer. These four trial boroughs were apparently chosen because one office processes all their benefit claims.
On the day of its introduction, we are asking opponents of the benefit cap from all over London to join us in an early morning protest at this faceless DWP hideaway in Stratford.
Cap Rents not Benefits – Scrap the Benefit Cap
Monday 15th April, 8am-10am.
Stratford Benefit Delivery Centre, Department for Work & Pensions, Jubilee House, Farthingale Walk, Stratford, E15 1AW.  Just next to the HMRC enquiry centre, a minute’s walk from Stratford station. Overground/tube: Stratford
The overall benefit cap is part of the government’s welfare reforms, along with the bedroom tax, changes to council tax benefit and Universal Credit.  In Haringey alone, over 1,000 families are affected by the cap, facing cuts to their housing benefit and eventually eviction.
So we’ll be talking to the workers implementing the cap, the ones compiling names to send to local authorities, telling them whose housing benefit to cut. But we’ll also be speaking to some of the thousands of people who filter past this office in the morning rush hour and have no idea what happens inside.
At £500 a week for couples or people with children, the cap is meant to reflect the earnings of the average family.  But it fails to include extra income from child benefit or housing benefit that a family renting in London would also get.
And it’s a lie that this cap is about saving money.  In its calculations, the DWP has not taken account of the extra costs to local authorities in dealing with the homelessness created. Landlords all over London have already been evicting tenants on housing benefit in anticipation of the cap.
We mustn’t fall for the rhetoric used by the government to describe claimants, which only distracts us from identifying the real scroungers: the fat cat bosses who pay themselves vastly inflated wages out of the profit they squeeze from our hard work; the rip-off landlords who raise rents every year, despite rock bottom mortgage costs; or the tax exiles who buy up mansions in our city and leave them empty most of the year, while families down the road are forced to “downsize” or leave London.
If the cap isn’t scrapped or landlords don’t lower their rents significantly, it could mean thousands of families being forced to move out of London, breaking up communities and support networks.
If you can’t make the protest, but think you will be affected by the cap, get in touch for advice and support, and to meet other people in a similar situation. Whatever your situation, if you want to stop the cap, get in touch and get organised!
Haringey Solidarity Group – benefitcap@haringey.org.uk – www.haringey.org.uk – 0845 223 5270
Haringey Housing Action Group – housingaction@haringey.org.uk – www.haringeyhousingaction.org.uk – 07817 483 167
 Posted by at 14:30
Apr 042013

With Brighton having already committed to NO EVICTIONS on the bedroom tax, other Councils are looking at ways around the problem.

Campaign pressure from Leeds has forced the Council to follow Nottingham’s example and ‘redesignate’ flats as one-bed less to reduce impact of Bedroom Tax.  See:


Leeds Anti-Bedroom Tax Protest – 20th April


Also for Nottingham:




Apr 042013

With the bedroom tax and other benefit cuts taking effect from 1st April many people are being left unable to pay and not knowing where to turn. Local benefit justice meetings have been organised bringing together local communities to support each other and to organise campaigns to put pressure on local councils and housing associations to say no to evictions and to look at redesignating properties to avoid the bedroom tax. There are already strong campaigns in Leeds, Manchester, Newcastle, Sheffield and Liverpool among other places and meetings have been held in Gillingham, Chatham, and Tower Hamlets.

More are planned – see below for a current list. For more information about any of these meetings please get in contact. Also please let us know of other meetings we may have missed.

Harlow – 6th April

Waltham Forest – 9th April

Strood – 17th April

Hackney – 18th April

Barking – 18th April

Tulse Hill – 20th April

Southwark – 25th April

Hamersmith and Fulhdam – 9th May (called by local Trades Council)

Bromley – 13th May

Croydon to be confirmed

Milton Keynes to be confirned

National Benefit Justice Summit 2 – 11th May Westminster

Apr 042013

With austerity Armageddon about to hit, the Tories have been on a calculated and cynical media offensive that confirms just how nasty these millionaire scumbags really are.

Sadly the range of vile attacks on disabled people that Monday ushered in were no April Fool. Over the past few years of ConDem assault on our rights and entitlements we have suffered the notorious Work Capability Assessment, cruelly designed and brutally run by private company Atos with the aim of pushing disabled people off benefits and the income they need to survive. Disabled people found fit for work related activity have been pushed into workfare and then sanctioned when they have been unable meet the conditions of their placements. To add insult to injury the harassment and destitution of disabled people has been justified by a narrative repeated and enflamed with relish by the right wing media that paints benefit claimants as scroungers and has led to a rise in hostilities towards disabled people and an increase in disability hate crime.

Now a whole host of new benefit changes and cutbacks are about to hit including:

–          The bedroom tax (or ‘under-occupation penalty’)

–          The end of Council tax support

–          The benefit cap

–          The scrapping of Disability Living Allowance and reassessment for Personal Independence Payments

–          The introduction of Universal Credit

–          The closure of the Independent Living Fund

Meanwhile benefits have only been uprated by 1% which is far below the rate of inflation.

Meanwhile legal aid for welfare cases has ceased which will leave many claimants unable to access representation to appeal decisions.

Before this government came into power disabled people were twice as likely as non-disabled people to live in poverty. Discrimination and prejudice against disabled people was rife in every aspect of live from unequal access to healthcare to discrimination in the workplace to prevalence of abuse and all too frequent occurrences of disability related murders.

This is the group of people the Tories have taken on and deliberately targeted to bear the brunt of the cuts. By 2015 over just five years disabled people will have lost more than 28 billion pounds in welfare while the poorest 21% of the population are carrying 39% of the cuts. For disabled people with the highest level of support need they are being hit 19 times harder than the average person in this country. After the new range of cuts hit even more people will be left with 0 or even minus income, dependent on food banks they cannot get to, facing eviction from their homes.

All of this is far from fair or decent.

The Tories therefore have to make a special effort to justify what they are doing and over Easter weekend we have had to endure the most sickening display of Tories at their worst. The frontbench, and Esther McVey, have been paraded one by one through the media pulling out their usual range of dirty tricks but with an audacity that, despite all we have been through, is yet able to shock.

On Saturday Esther McVey, Minister for Disabled People, denied people are disabled. On Sunday Grant Schapps pulled out Employment and Support Allowance figures as evidence of the success of welfare reform, celebrating how few claimants had been found eligible for the full benefit while endlessly repeating the mantra that people are being freed from a life trapped on benefits (freed by being pushed to their deaths?). On Monday Iain Duncan Smith assured everyone he could live on £53 a week if he had to. Then today George Osbourne talked at low paid workers in an attempt to stir up hatred against benefit claimants (while at the same time his government is looking to reduce the minimum wage).

The lowest point came with the release of the Daily Mail’s front page for 3rd April which cites the conviction of benefit claimant Mick Philpott for the manslaughter of his children as proof that the welfare system in the UK is broken (‘Vileproduct of Welfare UK’). As if everyone who claims child benefit turns into a murderer. It’s also not just disabled people and unemployed people who claim benefits, an increasing number of low paid workers are reliant on benefits as rents and costs rise while wages are drive down by schemes like workfare.

The timing of the Philpott court case and judgment that led to this story breaking is no coincidence. We know that the government uses the right wing to its advantage feeding in misrepresented statistics on ESA and DLA, but to use the tragic deaths of six children at the hands of an abusive father to score political points is just truly nasty.

It also shows that the Tories are scared.

We cannot let them dominate the news with misrepresented figures and statistics, stirring up hatred against disabled people and division between workers and claimants.

We must fight back.

Evict a Millionnaire – 13th April 2013 www.ukuncut.org.uk

Benefit Justice Summit 2 – 11th May, Westminster Central Hall, 11am  benefitjustice@gmail.com

To make a complaint to the Press Complaints Commission cite the demonisation and outright harrasment of benefit claimants as apparently taste and decency are not sufficient grounds for a complaint: http://www.pcc.org.uk/complaints/makingacomplaint.html


Apr 022013

Will you struggle to pay the rent? The Big Issue magazine would like to hear from you.


The Big Issue is looking at the impact of April’s cuts on disabled people, and would like to speak to anyone worried about paying the rent or being forced to move.


Contact Big Issue journalist Adam Forrest adam.forrest@bigissue.com / 0207 526 3315



Apr 012013
My name’s Frances Ryan and I’m journalist covering cuts to disability support. I’ve recently worked with DPAC for stories/interviews about DLA and ESA, and the bedroom tax.To fit in with new research on the cumulative impact of April’s cuts, I’m currently looking for disabled people who are set to lose multiple benefits – and would be happy to share their story (anonymously if needed) for a possible article. Will you be hit by the six major cuts? They could be:

Contributory Employment Support Allowance

If you’re currently on low rate Disability Living Allowance – or perhaps are on a higher rate but have reason to believe you will not be elibible under PIP

Bedroom tax

Council tax benefit reduction/loss

Any other benefit cut/loss coming in this April.

If you are going to be affected by simultaneous cuts and are happy to speak to me please email frances.ryan18@btinternet.com (rather than leaving a message here as I wouldn’t want to miss your message). Thank you very much.

 Posted by at 11:57
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