An Avoidable Death.

Mark Wood was 44 years old and weighed only 5st 8lbs when he died in August last year. Mark had Asperger's Syndrome, phobias of food, pollution, paint fumes, and social situations, and cognitive behavioural problems.

In January last year Atos Healthcare ruled that Mr Wood was healthy and able/fit to work. Following his assessment, in about April last year, Mr Wood’s Housing Benefit and Employment Support Allowance were stopped by the DWP, leaving him with just Disability Living Allowance as income. Mr Wood had been these benefits (and DLA of £40 a week) since living independently from 2006.

We have been campaigning for advocates for every autistic adult who is applying for benefits or needs to be reassessed since July 2010. Our early findings from a survey regarding the outcome of advocates being used from the first point of contact from the DWP suggested that 3 out of 4 adults who had an advocate to help them to fill in their ESA 50 Questionnaire, are not being asked to attend a face to face assessment.

Having a suitably trained advocate who has a good understanding and knowledge about autism, available to adults with autism has underpinned our campaigning efforts now for almost 4 years, and has been at the very core of our campaign.

• We have raised this issue with Ministers in writing on numerous occasions. We raised the issue with Chris Grayling, Maria Miller and Esther McVay. Carole Rutherford (our national co-ordinator) spoke to Maria Miller and Norman Lamb in person at All Party Group meetings for both disability and autism, about the about the urgency for advocates being offered to every adult with autism.

• We have raised the issue of advocates with the DWP via Professor Harrington’s consultations and reviews of the Work Capability Assessment.

• We have raised the issue of advocates during the adult’s autism strategy review. Less than two weeks ago we wrote again to Minister Norman Lamb about the need for advocacy to be included into the autism strategy for adults:

“When the autism strategy was rolled out in 2010 adults with autism were not being asked to account for themselves in face- to-face benefit assessments in the way in which they are now.

A revised strategy is urgently needed to reflect the impact that benefit assessment and reassessments are having on adults with autism.

Advocacy, and not being able to access a suitably trained autism advocate enabling an adult with autism to communicate effectively during an assessment, remains one of the biggest concerns for Act Now for Autism.”

• Anna Kennedy even raised the issue of advocates with David Cameron in person and via a letter handed over to him while she was visiting Number 10 Downing Street last year:

In a response from Esther McVey and not David Cameron, some months after the letter was handed over, Ms McVey turned down an invitation to meet with us and stated that adults with autism could choose to have someone with them who they trusted or who knew them well, when they went for a Work Capability Assessment.

The Work Capability Assessment process to get Employment Support Allowance begins weeks, and in some instances months, before the face to face assessment takes place. Having an advocate who understands autism while filling in the ESA 50 questionnaire can make a big difference to the outcome of the assessment process.

Today we are both shocked and saddened by these headlines and story in the Oxford Mail:
A "VULNERABLE and fragile" man starved to death four months after most of his benefits were stopped and he was left with just £40 a week to survive on.

His GP Nicolas Ward told yesterday’s proceedings: “He was an extremely vulnerable and fragile individual who was coping with life."

“Something pushed him or affected him in the time before he died and the only thing I can put my finger on is the pressure he felt he was under when his benefits were removed.”

Dr Ward, from Bampton Medical Practice, said he had not been contacted by either Atos or DWP about Mr Wood’s medical history, and revealed that if they had asked for his professional opinion he would have said Mr Wood was unfit for work.

His mother Jill Gant said “He found it difficult to accept help from his family because he tried to live independently so he gave the money away. “He had a lot of problems, but he was very gentle and sweet.” At the inquest, Mrs Gant said: “I think he died of the severe effects of malnutrition, but there were precipitating causes: 

“Extreme stress and lack of money caused by the removal of his benefits led to his eating problems, and malnutrition led to his death.”

Some of us here at Act Now for Autism know personally from first-hand experience the full impact that extreme anxiety can have on eating and the well-being of someone with autism.
 
Although we cannot know for certain that an advocate would have made any difference, the sad death of Mark Wood has only strengthened our resolve to continue to campaign vigorously for an autism specific advocate for every adult with autism who is facing a benefit assessment or reassessment.

We are the only autism campaign group who has made advocacy one of our leading priorities and we will continue to do so. 

Our sincere condolences and thoughts are with Mark's family. 

(Picture from the Oxford Mail)

Letter to Norman Lamb MP & Minister for DoH

Dear Minister,

Next month you will publish a review of the English Autism Strategy. In the run up to that publication Act Now for Autism would like to make you aware of the reality of living with autism in 2014:  

On 13^th March last year you attended an All Party Group for Autism meeting where you sai:

“We would never tolerate someone with cancer getting the wrong care or treatment…and we should not tolerate someone with autism or Asperger’s Syndrome getting the wrong care or treatment or not getting any care at all.”

In February 2014 there are far too many adults with Asperger’s Syndrome who are getting the wrong care, treatment or no care at all. We simply do not have enough professionals with the required understanding and knowledge of autistic disorders to make a difference to the lives of those living with the condition.

In January NICE published the Autism Standard (QS51) and stated that the quality of care for people with autism is poor and varies across England and there is a real variation in the type and quality of care that people receive with many autistic patients living with other conditions that go undiagnosed. Nice called for clearer standards to ensure consistent treatment across the country.

Local Authorities and Health Service providers continue to do nothing for some of the most vulnerable people in their regions. In the years since the Autism Act and the roll-out of the Adults Autism Strategy, there has been a great deal of talk about services and provision for people with autism, but almost no action.

Our supporters tell us that although their Local Authority does now have an Autism Action Plan, they continue to report back to central government that their plan is ‘in progress’.

Having a plan that has been ‘in progress’ for more than three years with no actual progress is a failure and just not good enough.

There has to be some way of accurately measuring the progress that Local Authorises have made and holding them accountable.

It was very positive that the latest self assessment sought to include adults with autism who you asked to comment about the performance of their Local Authority. Many of the adults who speak to us on a regular basis, who are active within their Local Authorities, were totally unaware that their Local Authority had been asked to have their self assessment signed off by adults with autism.

Concerns are being voiced to us by adults with autism and parents and carers, who are active within their local partnership boards and working groups, that meetings with their boards and groups are now very infrequent and are often cancelled at the last moment due to a high number of apologies. Assurances are being given to stakeholders that meetings will be held to amend draft action plans, only for them then to find out that the action plan has already been signed off.

The problems that people with autism face are real, and far from their quality of life improving over the last three years, for many services have been slashed or stopped altogether. With further cuts to come and changes to benefits, where does that leave them?

Autism does not fit neatly into any one box and because of this it has become a hot potato that is being passed from one provider to another.  It is in fact adults with autism who remain unsupported and in need who are at the end of the line. They are the ones left holding the hot potato.

Adults are telling us that without an assessment being carried out they are being told by social care providers that their difficulties are mental health related. How is it possible to come to that conclusion without an assessment being carried out? Adults who have communication and socialisation impairments are being asked to go into detail about their own condition and how it is impacting on their lives, with people they have never met or over the phone. It is simply not acceptable to expect autistic people to communicate their needs this way.

We fully understand that adults with autism can and do have mental health issues, however we are concerned that assumptions are being made by professionals who often lack a depth and breadth of understanding about autistic conditions.  

Mainstream mental health services are not equipped to deal with adults who have autism. Long standing diagnoses are being questioned by people within mainstream mental health creating increased anxiety for the adults who are trying to access support. 

Adults with autism are being told that there first point of contact for their difficulties must be their GP who will then signpost them on to the correct services for them. In 2009 a national audit office report stated:

“Four out of five GPs (80%) indicate that they require additional guidance and training to identify and manage patients with ASD more effectively.

Seven out of ten GPs (71%) do not provide specific ongoing support, monitoring or condition management for patients diagnosed with autism. “

In 2012 the National Audit Office published a report ‘Progress in implementing the 2010 Adult Autism Strategy’ in that report they concluded:

“Less progress has been made in improving access to social care assessments, personal budgets and diagnostic services in local authorities, which can all help adults with autism to access services and support.”

And that:

“Effective local services and support are crucial in improving outcomes for people with autism.”

 

There were many areas in their report which were marked as ‘not achieved’.

Not achieved.

Ensure that autism awareness training is available to everyone working in health or social care and work with partners to develop effective training modules which can be used by local authorities and primary care trusts to create local training programmes.

When the autism strategy was rolled out in 2010 adults with autism were not being asked to account for themselves in face to face benefit assessments in the way in which they are now. 

A revised strategy is urgently needed to reflect the impact that benefit assessment and reassessments are having on adults with autism. 

Advocacy and not being able to access a suitably trained autism advocate to enable an adult with autism to communicate effectively during an assessment remains one of the biggest concerns for Act Now for Autism. Another burning issue relating to the benefit assessment and reassessment process - who exactly are adults with autism meant to go to for supportive information about their condition? 

There are literally thousands of adults with autism who have seen no one in relation to their autism after being signed off from children’s services. Who can these adults turn to as a matter of urgency if they require supportive evidence? 

The assessment process is contained within time restraints making it all but impossible for adults with autism to access the professionals they need to enable them to produce supportive evidence. 

As we have already explained adults with Asperger 'sSyndrome and High Functioning Autism do not meet the criteria to enable them to access support.

During the last three years it has become clear to us that adults with Asperger's Syndrome are caught up in a truly vicious circle with no way of being able to get out of it. 

We need someone or some process to monitor and evaluate the progress of the autism strategy to ensure that progress really is being made. We also need to record outcomes.

Without these things being in place we are very concerned that when the next review comes along we will find adults with autism and their parents and carers with exactly the same as they have right now: NOTHING. 

We thank you for taking the time to read our letter.

Sincerely

Act Now For Autism