Last week, we lost ‘Dean’*, a long standing client, a man with huge character from whom we have all learnt a lot. This case study is written by B, his support worker for the last year or so. Dean had been on case load for at least 10 years. The on-going support for this man is a true testament to our ethos of long term, unconditional support. He was a typical non-engager, very difficult to support and in fact, working as a team to continue his support has been hugely influential in shaping the organisation we are today.
*name changed
‘Dean had been very sick for a number of years. He was confined to a wheelchair due to 75% skin loss on his legs, this was through IV drug use, abscesses and contracting a flesh eating disease whilst in hospital – Dean has always been a fighter!
Christmas has always been a very difficult time for Dean – a few years ago his brother who was his best friend, sadly took his own life over the festive period, whilst Dean was in prison and unable to attend his funeral. Dean never really forgave himself for this. This Christmas was a particularly hard one for Dean, his physical health began to deteriorate dramatically – with his lifestyle and having Hepetitis C for decades, losing his tenancy, he began to rough sleep again. Dean has always been a very defiant man, refusing all support and generally telling all services to “f**k off!” Despite his poor health, he refused for a number of weeks to go into a hostel but eventually he agreed – after trying to take his own life. Once he had made this decision, we supported him to engage with a hostel, but they could not accommodate his needs and he was too “high risk.” Another hostel did accept him and he stayed there for one night but they were also concerned about his health and in order to stay Dean would need to have his medical issues addressed. Despite his track record as a non-engager, Dean did try to organise some medical assistance but was faced with incredibly long waits and became frustrated and angry. Furthermore, Dean then faced a situation where he was asked to leave the hostel he had stayed in the night before. We enquired as to why this was and were informed that the smell from his wounds was over-powering for staff and other clients. This was so difficult for us as a team, as we knew how vulnerable he was physically and mentally, aside from the risk of rough sleeping in sub-zero temperatures. We felt as frustrated and angry as he did.
Despite heightened emotions, we tried to implement a plan to get Dean the support he so desperately needed. The hostel manager met with us and listened to all of our frustrations. They over-turned the decision and Dean was invited to return. At first Dean said he would not be going back there – he was embarrassed and belittled by the treatment he received. We were very worried about his welfare – his mental and physical health and how vulnerable he was. Adding to the complexity of this situation was the fact that he had been very recently assaulted by the owner of a restaurant, having bleach and rubbish poured over and was kicked in his already very painful legs and his wheelchair was thrown away from him. It was clear that unless the support services took a joined up approach to support Dean, we were going to lose him.
We organised a professionals meeting, the drug service attended, adult social care, housing, hostel staff, GP staff, two homeless services and Simon on the Streets. I put forward my case and what I thought needed to happen but that I had barriers – my relationship with Dean, although good has always been very strained because of how angry Dean was and how abusive and frustrating he was at times – downright insulting. One of the services offered to do all the donkey work and be my scapegoat (Dean said he did not want to work with anyone but us). We joined forces in advocating and fighting for the support Dean so desperately needed. All services were to continue to speak to Dean about seeking medical treatment, however he wanted to do it and to see if he would go back to the hostel – he could have whatever room he wanted.
Dean agreed after much persuasion and went back to the hostel but he was in and out of hospital every few days. He would be discharged because of his behaviour – being abusive towards staff, saying he had a higher IQ than all of them put together, informing them of what they were doing and what everything was for, not necessarily in the friendliest manner! I guess he thought he could have been a doctor in a former life with all the medical knowledge he had.
A few weeks passed like this – I went to go see Dean to introduce his new worker from the other service we were partnering with to get him the best support. He looked to be in incredibly poor health, the hostel staff were as concerned as us, so we immediately made arrangements for him to have some medical assistance. The nurses who saw him sent him back to the hospital, he was suffering with septicaemia and fluid on his stomach. Dean asked the GP staff if they could arrange a methadone prescription for him so that he would stay in hospital and not have to leave so that he could use. The fact that Dean asked for this was amazing! This was him showing that he wanted to engage fully in support – the nursing staff told me they would sort this for him and for Dean to get himself up to hospital. I felt confident that the work and time we were investing in Dean was having an impact. He absolutely knew we were fighting his corner.
When Dean’s other worker went to see him in hospital later on, he found that Dean had been refused pain relief and methadone. The worker called the GP up who told him that that the methadone prescription had never been promised to Dean and that pain relief made him at risk of overdose as a frequent heroin user. This made all three of us furious! We felt that all he needed was an incredibly small dose, something that would make the rattling bearable, just so this dying man could get the treatment he needed! Dean refused to stay and returned to the hostel. However, he continued to engage with GP staff for his legs and engaged brilliantly with myself, his new worker and hostel staff. He was a joy to work with, he apologised for speaking to me badly the weeks before, was funny and fairly happy.
The week before he died Dean went shopping, for lunch, to the cinema and had the best day. He did all this instead of spending his money on heroin. He was so proud of himself. We were so happy for him, in Deans’ world this is a huge achievement and a sure sign of developing self-esteem. Sadly, after us seeing him on the Friday, he deteriorated over the weekend, was rushed into hospital on Monday and died on Tuesday evening – four hours after his other worker and I saw him for the last time. That final visit to the hospital was one I will never forget. It was heart-breaking and an image that is not leaving our minds.
Even after Dean’s death, he still has us running around like mad, advocating for him and questioning services. We are struggling to find any next of kin who can authorise anything other than a hospital funeral for him. So at the moment, our sincere wish that he will be buried in the new clothes he had bought for himself the week before he died, looks unlikely to occur. It’s protocol, we understanding that, but it’s devastating all the same. It could take 6 months for his funeral to take place, as we try to find next of kin. I only wish that the relationship I had with Dean right at the end had had the time to grow, to the point where he might of considered me as next of kin, like a number of my other clients have. The fact that we can’t find anyone who can count as kin makes me feel so desperately sad. Myself and Dean’s other workers have been speaking every day, driving around together, speaking, phoning, emailing everyone – police, councils, children’s homes, going to the bereavement office together, friends to find a next of kin, so that Dean can get the treatment he deserves.
Everyone who knew Dean has been deeply affected by his death. He was and clearly always will be the most challenging person and situation I have ever worked in and with. I really want to remember him positively though and a clear legacy of working with him, is the relationships that we have been able to build with the hostel and other services. I really feel like this will set a new standard of partnership working going forward. Our role is to engage the most marginalised and vulnerable people. Having at our finger tips, the willingness of services to collaborate on a joined up approach, can only benefit my clients and other people like them going forward.
Dean, from all the team, thank you for being so cranky and teaching us so much.’