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)