Jed Allen wants to choose where he lives (Image: DevonLive)
A disabled 26-year-old man is begging to be given the right to decide where he lives.
Jed Allen is wheelchair-bound due to being born with muscular dystrophy and is currently living at Dame Hannahs in Ivybridge. Placed in temporary accommodation 18 months ago, miles away from his family and friends, Jed has been told he will have to remain there indefinitely.
Jed has also been told by NHS Devon Integrated Care Board (ICB) that as of this month, it will no longer continue to fund his externally provided 24/7 medical team who have been with him for many years and are credited with having kept him alive longer than his expected lifespan. Instead, staff at Dame Hannahs are being trained to take care of his complex needs.
Jed is currently on a housing waiting list, reports Devon Live, but once his current care provider Thornbury Community Services is removed, he has been told by the ICB that it cannot guarantee it would agree to a package of care at home and which company would be able to provide it.
Under the new proposals, it is also likely that Jed’s disability van – currently supplied by Disability Focus – will also be taken away and he will share the use of disability vehicles provided by Dame Hannahs. Having his own van currently gives Jed the freedom of being able to go where he wants whenever he wants and do activities he loves such as singing or visiting his family.
For the first time in his life, Jed says he is battling suicidal thoughts and is now on anti-depressants because he says his wishes are being ‘ignored’ by the ICB, despite having full capacity to express what he wants. NHS Devon, the organisation responsible for the majority of the county’s NHS budget, says it is unable to comment on individual cases, even with the consent of the individual to do so.
Revealing how he feels his quality of life has and will continue to deteriorate, Jed said: “I used to go out and about in Exeter whenever I wanted to. I had more freedom and I had my family and friends. Being told I can’t move back to Exeter with my care team has really upset me and made me cross. I’ve had enough. I am on anti-depressants to keep myself calm and I am having thoughts I want to kill myself. They have messed me up.
“It’s not fair. It should be about me; not money. It’s my life.”
Jed, who was born in Exeter, is currently residing in a shared bungalow at Dame Hannahs – a charity that provides learning, care, support and fun for adults with a range of disabilities – with 11 other residents, including his younger brother Aston who also has muscular dystrophy. Jed was removed from his home in Exeter in August 2021 for safeguarding reasons during the coronavirus pandemic.
He recalled: “I was told by the ICB there was a two-bedroom flat in Exeter for me and my brother to live in, but it needed redecorating. I was told I had to go for respite care at Dame Hannahs for six to eight weeks until the flat was ready, but I was still adamant I did not want to go and have been there ever since.
“Going home is no longer an option so what I want is my own place. I don’t want to be at Dame Hannahs. I don’t like it because I don’t feel happy. I am too far away from my family.”
Jed was born with muscular dystrophies (MD), a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability. It is a progressive condition which means it gets worse over time. It often begins by affecting a particular group of muscles, before affecting the muscles more widely. Some types of MD eventually affect the heart or the muscles used for breathing, at which point the condition becomes life-threatening.
Jed Allen and his dad Trevor (Image: DevonLive)
There’s no cure for MD, but treatment can help to manage many of the symptoms. Jed is now wheelchair bound and is unable to breathe without the use of a ventilator and has a tracheostomy tube.
His biggest fear of all is no longer being under the care of his current care provider. Jed, who has his own bank account to manage his finances, said: “I’m frightened I could die if they take my nurses away. I don’t want that to happen to me. I want them to stay and look after me because they are the ones who keep me safe.
“They are also trying to transfer my hospital care from the RD&E to Derriford. At Exeter the doctors and nurses have known me for years, some most of my life, and I feel comfortable there. It’s like they want another connection of mine to Exeter gone. I don’t feel listened to.”
Pleading to be heard before it’s too late, he added: “I want to keep my nurses, I want to be in Exeter because it’s my home and I want to feel happy again and enjoy my life and not be told what to do.”
A spokesperson for NHS Devon said: “We are unable to provide information about individual cases due to our need to maintain patient confidentiality. Our continuing healthcare team always involve patients and their families in developing packages of care and do their best to meet the individual needs of each person, seeking advice from specialists and independent advisors where necessary.”
A spokesperson for Dame Hannah Rogers Trust added: “For reasons we are unable to comment on, Dame Hannah Rogers Trust was approached by the local authority and asked to provide accommodation and support for an individual that they commission a package of care for. As a charity that specialises in supporting people with complex health needs, we agreed to provide accommodation for this individual, subject to a joint working agreement between the local authority and another care provider.
“Following a very successful initial stay at Dame Hannahs, the local authority requested us to work towards a transition period, to take over the full package of care for the individual. The trust continues to work with all those involved to ensure that the holistic needs of the individual are met in a safe and effective way. We are unable to comment further at this time.”
Under the National Framework for Continuing Healthcare and Funded Nursing Care 2018, Continuing Healthcare (CHC) has a duty to provide safe and affordable care for anyone funded by health. It includes a requirement to make sure their healthcare needs are being met.
In an email to Jed’s family in October 2021 following his prolonged initially temporary stay at Dame Hannahs, a CHC lead nurse of Devon’s Eastern CHC Team stated the accommodation was a ‘safe and appropriate placement’ for Jed which had been agreed to be funded by the then Devon Clinical Commissioning Group (CCG), but that it had not agreed to ‘any other funding option’, ie Jed living in a flat or moving to a current or shared accommodation.
It was added there were no flats or other accommodation which were able to meet Jed’s needs at that time leaving him in the care of Dame Hannahs. His family were informed the CCG were unable to continue to support the current arrangements of funding the placement at Dame Hannahs and Thornbury Care Services (TCS) undertaking the actual care of Jed and that it would be developing a transitional plan for TCS to be replaced by Dame Hannahs staff.
In August 2022, an Individual Package of Care (IPOC) Appeals Panel upheld a decision made earlier in the year for Jed to remain at Dame Hannahs on an ongoing basis with a gradual transitioned change over to Dame Hannahs staff when it was appropriate to do so. The appeal panel stated it agreed Jed’s views were ‘fully taken into account and acted on where possible in line with IPOC policy’ and his ‘rights have not been compromised’. It added it was assured Jed had the ‘means and ability to visit Exeter should he wish’.
It added housing/ tenancy issues were not ones the IPOC process can address and it was aware the family had been in touch with the local authority to discuss options.
Recently it has been confirmed steps are now being taken for Dame Hannah Rogers Trust to take over the full management of Jed’s care from an unconfirmed date this month.
Desperate for Jed to get his wish of residing in his own home in Exeter with his current nursing team, is his father Trevor, of Exeter. He said: “In my view, this is about money and politics. We feel more should have been done at the start to find Jed a home before it reached this stage.
“Jed can make his own decisions about where he wants to live and what care he wants. Jed is a people pleaser and will say what he thinks you want to hear if he does not know you. When he was asked by his brother’s social worker within 48 hours of moving into Dame Hannahs if he liked it he said yes, even though he wasn’t. He only said it once and that has been held against him ever since.
“At the panel meetings to discuss his care package Jed was appointed an independent advocate who is meant to voice his wishes. He has had four different people and they didn’t spend any time with him in the run up to the meetings and if they did turn up, it was like they were pushing an agenda.
“Our appeal against the decision to keep him at Dame Hannahs was rejected because they said his needs are and can be met there, but they’re not. The sad thing is at Dame Hannahs, the majority of residents are non-communicative as they are so severely disabled.
“All their staff need training before they can start looking after him because he has very complex needs. He will have to get up when he is told by their staff and when he can go out and has to come back because it is very institutionalised there. He is losing the people he trusts most in the world and will be miles away from his family and friends who are his support network.
“All I want is my children around me; I love them and wish I could live with them and look after them but I know that’s not possible. Neither of my boys has a long life ahead of them and I do not want them to suffer any more.”
Jed has been registered with Devon Home Choice, which provides council and housing association homes, since January 2023.
A South Hams District Council spokesperson said: “An officer at South Hams District Council would be happy to provide support to discuss Mr Allen’s accommodation needs and find out what his options may be with regards a move back to Exeter. Should Mr Allen wish to pursue this option, our officers are experienced in working in partnership with Adult services and with our partner district housing teams to achieve the best accommodation outcomes for residents in the area.”
