My thoughts on PIP – Brian’s story

A stock photo has been used on this blog at the request of the author. 

Brian has been caring for his son, Michael, who lives with schizophrenia. He shares the positive impact of Rethink Mental Illness’ supported accomodation and his concerns about the benefits system.

Michael first became ill when he was 19. He’s now 52. His job was as a lab technician and he was studying for a BTEC diploma. He was an experienced rock climber and canoeist. He passed his driving test on the first try. Until aged 19, we had no reservations about his health - he was just an active young man looking forward to his life ahead. That suddenly changed when he collapsed at work.

He was sectioned at the local psychiatric hospital and prescribed an antipsychotic drug which didn't really improve his condition at all. He continued to be completely and utterly confused, delusionary. We visited the hospital virtually everyday and he said he didn't want us to visit him on several occasions. It was dreadful.

The hospital staff were concerned for Michael and suggested he have a course of ECT (electroconvulsive therapy). ECT did improve Michael's condition - the section was removed and he was allowed home leave on weekends. After three months, he was discharged and returned to work.

Unfortunately, twelve months later, Michael had a medical illness which triggered his delusionary thoughts again and brought on his all consuming OCD (obsessive compulsive disorder). Since then, he has never recovered but thankfully remains mentally stable.

He lived with us for the next eight years, receiving support from social services, his mental health worker and the psychiatrist. Rethink came on the scene – we were told Michael could be offered his own supported housing accommodation. We were thinking of his future – there wasn’t any life or independence for him living with us.

Michael was offered a Rethink supported housing flat near where we live. It’s absolutely perfect and terrific for him. Initially, he received a massive amount of support - especially from us, Rethink, social services and the NHS - to help him settle into his new home and survive on his own. We are eternally very grateful for Rethink’s support, which has been brilliant. Without Rethink’s support in 2001 and up to the present day, Michael would not survive on his own.

Michael is now able to enjoy a good social life. He is outgoing and plays badminton, pool and crown green bowls. He is a good bowler and plays for the league team on merit.

As parents in our 80's, we are now trying to put extra help in place for when we disappear off the scene for whatever reason. We are very annoyed and frustrated with the DWP regarding his PIP (Personal Independence Payment) claims. Prior to PIP, Micheal was awarded ESA (Employment Support Allowance) and DLA (Disability Living Allowance) on an indefinite basis. Therefore, no reviews and no forms to complete.

In 2019, Michael was informed by the DWP (Department for Work and Pensions) that he would need to complete the 20 pages of PIP claim forms. Its impossible for him to do it on his own, so I complete them for him. You need to be careful because of the ambiguity of some of the questions, which appear to be more related to physical conditions rather than severe mental illnesses. 

We have only ever been awarded PIP for a three year period, despite us saying his schizophrenia was a lifetime, complex and severe illness on several different claims since 2019. We got letters from the psychiatrist, GP and CPN supporting this claim, with a request to indefinite PIP. The psychiatrist also stated in the letter that Michael will never be discharged from his local Mental Health Trust’s patient register.

I am therefore dismayed that the DWP continue to refuse issuing an indefinite PIP award, that they continue to refuse esteemed expert opinions that Michael has a-life enduring, severe mental illness.

I am very worried that the DWP are not following current governmental statements made on TV and in the media, namely the one that claims " those with severe life enduring illnesses should be exempt from regular PIP reviews”. I expect we are not alone in believing that is the case.