For more than 16 years, Joseph and his family were regular visitors to Naomi House & Jacksplace. When Joseph came to the end of his life in 2023, at the age of 19, the care he received from Dr Amanda, our specialist in adult palliative medicine, meant so much to them.
Joseph’s mum, Joanne, shares their experience of the care they received.
Joseph really enjoyed his stays firstly at Naomi House and then Jacksplace. He thrived on the attention he got when he was there. He loved the opportunities for getting in the hydrotherapy pool and doing things he wouldn’t normally do, such as messy artwork and driving a boat on the Solent. Joseph loved his TV, especially CBeebies which really made him smile. He loved one to one time, rough play, a cuddle and he just loved to be loved.
Joseph had Down syndrome, severe cerebral palsy, severe global development delay, a heart defect, kidney failure, scoliosis and microcephaly. He was also fed via a PEG as he had an unsafe swallow.
When Joseph became very poorly, we didn’t know what we needed or wanted… but they did.
Despite his complex health conditions Joseph was, in the scheme of things, quite fit throughout his life. We rarely had to go to hospital for treatments other than the various regular checkups and operations.
In 2020, just as Covid struck, Joseph was admitted to hospital twice because he was having difficulties with his breathing, but then not again until October 2022. I had contracted Covid, the first time for any of our family since the outbreak began, and about five days later Joseph started to struggle with the oxygen levels in his blood and his breathing. He still tested negative for Covid but we knew he wasn’t right so he was admitted to the Winchester Intensive Care Unit, where they found he had acute pneumonia. We were in hospital for about two and a half weeks and then discharged. A few days later Joseph was struggling again, and he was admitted into the University Hospital Southampton (UHS) isolation ward, where, as well as pneumonia, he was now showing a positive result for Covid.
A few days after being admitted, a lady popped her head in and introduced herself as Dr Amanda Brain. She works jointly with UHS and the Naomi House & Jacksplace palliative care team. I remember thinking – “well I am sure I don’t need to see you, so I’m not sure why you are here”. Over the coming weeks Dr Amanda kept coming by and chatting and talking through Joseph’s medication and progress.
It got to the point where I enjoyed Dr Amanda coming round as there was no rush. We could talk in detail about Joseph and what was good and what was not so good at that time.
The weeks progressed and there was no sign of Joseph being discharged. He would perk up and then go back down again. Whilst there we were also introduced to Harriet, a colleague of Dr Amanda. She is a clinical nurse specialist who also works jointly between UHS and Naomi House & Jacksplace.
After a couple of months in hospital the awful reality was confirmed. Dr Amanda, Harriet and the consultant on duty came in and broke the news; Joseph was slowly fading and there was no more that could be done medically to make him better.
I was able to spend time with Joseph whilst he was in hospital and over a period of time I got to know him and his family. It became clear to me that Joseph was reaching the end of his life. Having the time to get to know him and his family in hospital meant that I was able to have the necessary conversations with them about the next steps.
Learn more about Palliative care and Dr Brain here
For one of the worst moments of our lives, the news was delivered in such a lovely way (as odd as that sounds). Time was taken to explain everything, and we were given time for it to sink in and emotions to run high. The professionalism of the team was fantastic. While saying the words no parent wants to hear, there was enough sympathy and empathy for the delivery to not be such a blow.
After a few more weeks we left hospital and set up at home hoping every day for a miracle that never came. We were told Joseph would have about three months to live. He managed four, so maybe that was the miracle.
In the last two to three weeks of Joseph's life, he stopped watching telly. This was the key sign to his family, that Joseph had checked out. If he wasn't even watching TV, that was him letting us know. He was much more sleepy and spent a lot of the day sleeping. He would still raise a little smile at things but he was so exhausted it was just hard work for him.
Leading up to his death, Dr Amanda and Harriet called every week and visited every other. This was a fantastic connection for us and gave us time to ask questions and for them to see how Joseph was doing. There was no such thing as a stupid question, we could ask anything we were not sure about and they would give us an answer.
They set up a care plan and involved Mountbatten Hospice, another charity providing out of hours support and medical help. If someone from one team came to visit they would report back to the other on how Joseph was doing. We also had the Naomi House & Jacksplace Play & Activities team coming every week to see Joseph and entertain him for a couple of hours. Often, towards the end, he was very drowsy, but they still came. With hindsight it was a perfect way to see how Joseph was and be able to pass on any updates without it feeling intrusive in any way. Everything was seamless.
Joseph died at home on St Joseph’s Day in 2023, aged 19. It was a very peaceful and calm passing.
Without the care of the Naomi House & Jacksplace team we would have been lost. Jacksplace is unique, there is no other provider, through the NHS or otherwise in the south of England that provides this service for young adults. The knowledge, compassion, attention to detail and care for us as a family was unending. Even now it continues in such a caring and open way.
Naomi House & Jacksplace is a vital charity and it is astounding to me that it is predominantly funded by the generosity of local people. Without this support there would be nowhere for families to get the help and care they need throughout a severely disabled child or young adult’s journey.
As I said from the start - we didn’t know what we needed or wanted… but they did, and they smashed it.