Due to the pandemic and restrictions The Prince & Princess of Wales Hospice has put a hold on piloting our flexible short break stay service for young adults living with a life limiting condition. However, once all restrictions are lifted we will plan to complete the pilot. Currently we provide support and care for young adults by reviewing them at our Transition Clinic and assessing their needs. This can be currently done by speaking to them on the telephone, or by virtual platform like ‘attend anywhere’. The young adults are supported by our wider multidisciplinary family support and rehab team as well as signposting to other services. However, the hospice teams recognise and appreciate that these young adults are living with complex symptoms, with conditions that can change very quickly and with care provided in the main by their families resulting in them often putting their needs and being physically and emotionally exhausted. In recognition of this it has been agreed that young adults can access a bed within in the inpatient unit (IPU) for symptom assessment and management and/or carer distress. The referrals will be triaged in line with our triage policy.
The above Young Adult Service (which covers all of the services highlighted above) is a ground-breaking service, not only for Glasgow, but for the rest of Scotland. It offers a real opportunity to drive the agenda forward for those transitioning from paediatrics to adult services, providing a service for individuals who often feel forgotten.
The Young Adult Service provides a safe and supportive environment where knowledgeable and approachable health care professionals can build a partnership based on trust with the young adult, allowing them to share their story and feel that their voice is heard. As part of a pilot for this service a young adult was admitted to the IPU and has completed a blog based on his experience. You can read the full blog here:
Reflections from Young Adult (YA) Admission
A patient evaluation was undertaken on Thursday 11 March prior to the YA leaving the Inpatient Unit (IPU). The YA has since followed this up with a thank you to all staff for supporting his admission to the hospice and that he really enjoyed it – so much so he was looking to rebook for another stay.
Here are his words:
I didn’t think about cancelling my admission as I had my 1st vaccine so knowing this, I felt safe. Initially I was anxious as staff did not really know how to do my cough assist, but after a bit the staff then managed this fine and again it helped me feel safe. I was also anxious about the shower trolley, but I have done it and it helps that I can sit up a bit in it. I was also worried about my mum not staying however having the consistency of staff really helped me and I started to worry less about this. Staff also picked up on my likes and dislikes very quickly really by the end of the 2nd week I felt we were on steady ground again this me feel safe. I felt the staff were really friendly a bit like a paediatrics vibe. I think the staff in the QE can be grumpy. I felt they (staff) had lots of knowledge already like with my machine etc and also they were mature.
I knew the team would wear PPE but not as much I initially felt like I was contaminated but then realised it was for my safety and for others. Almost everyone is wonderful in the hospice.
What surprised me was how nice everything was. I previously came to visit but did not really pay attention to anything. The hospice is so clean, and it did not smell like a hospital more like a hotel. I like my room and the big windows ceiling to floor. I would worry if it wasn’t neat and tidy and clean especially with my risk of respiratory infections. The previous place I stayed in was damp and smelled and had bed bugs, so this is great.
I liked that the staff always checked with me if I was ok for visitors, they would come and ask me personally about this. I worried about security in other places especially if I was on the ground floor however I felt safe in the hospice because of where it is situated, the gates at the front, all the security cameras round the building and having a porter on duty 24/7 who can watch the cameras et again this all just made me feel safe.
Another thought is around my health and if I was to take unwell there is always staff around like nurses and doctors during the day and nurses and doctors on call in the evenings and weekends this gave me peace of mind.
I am glad that the staff in the hospice got to see how much I eat as I am not believed. I lived on cheese and onion toasties and tomato soup I loved them. I would have the toasties for breakfast and lunch. I also think it will be good for them (staff) to talk to social work to let them know how much care I need as again I don’t think people outside here believe this and so people knowing this helped reduce my stress.
I think being in the hospice helped keep my mind healthy as the number of phone calls were reduced. At home I am on the phone all day with no time to myself. It helped to relax me. I also had a hand massage that that really helped me relax to.
Being moved more helps with my respiratory care which is a good thing. The more movement I have its better for me as it keeps everything moving and prevents me getting stiff.
I feel in here I was more active as I was getting moved about a lot I have pain in the thigh area and shoulder and being moved a lot helped with this. Being more active helped me sleep better although the dry air did give me coughing fits.
I felt I really achieved something by coming into the hospice I felt I was brave. I always said I wanted to be a guinea pig – the first young adult to come in and stay and I was. I know I had to do things differently because of the staffing numbers but I did feel it took confidence to do this. When I was in the hospice for the first couple of days, I scared to ask for anything as I didn’t know the staff. Then I realised that the staff knew their stuff very well trained and qualified and probably doing this longer than I have been alive, then I started asking for help and if I needed things done.
I felt the staff were gentle and caring when they moved me and also always asked how I liked things done and if I was ok. Someone always popped their head in to make sure I was ok. If staff were busy and I asked for something they always came back and did it. I liked that there was a guy (nurse) and we carried on and talked about boy things. There are things I would say to a guy but not ladies as its not very respectful.
As above with nurtured I felt the staff respected and included me because they always asked how I liked things done. I felt my voice was heard. They included me in the chatting and about decisions that are about me. They were honest with me for example you could have a shower now but later on might be busy and that might not be possible so including me in my decisions and I felt that we always came to an agreement.
I feel I am responsible because I am here and its also giving my mum a break so that she is not looking after me 24/7. It allowed my mum to come in and for me to just spend time with her and for my mum not to have to do all of the caring duties. Even if my mum was there I always asked the staff to help me just so my mum was getting a break. This also gave me an opportunity to get used to the staff in case I need to come in as an emergency.
We have lots of information above about what was good for you. What could we improve on?
- The rooms were too hot and I found it too cold if the doors were opened
- Not being able to work the TV by myself is annoying because I watch the news every day to see what’s happening with COVID. I found this annoying and frustrating.
- Also not being able to work my phone properly in here, I have to use voice activator to phone people.
- I had the baby monitor on but sometimes when I needed help the staff couldn’t hear me I had to use the voice activator to phone my sister to tell her to phone the ward and tell them I needed them. This didn’t happen a lot.
- You need more comfortable beds its not comfortable for me in this bed it hurts by bones can you get anyone to give you a bed that you could keep and then it would help other young people when they arrive, although this wouldn’t stop me coming back in again?
Would you return?
Yes, definitely, I maybe book for May or sometime near that.
What would you say to other young people about coming to the hospice if they were worried?
I would say just come it’s a good outcome and a good experience just try it. It gave me something to do and look forward to because during COVID it has not been great for me anyway.
How would you describe it to another young adult?
It’s like a hotel, and everyone is friendly you will make good friends, I found all the staff lovely you can have a laugh I got comfortable by the 2nd week I was here and messed about with everyone. I miss being there I would like to be back as soon as possible. Don’t be hesitant and if something is not right just ask don’t be afraid, they will help you as much as possible.
I would say you would be ‘safe’, ‘respected’ and have your privacy respected
The number of YA transitioning to adult services, as a direct result of better standards of care and advancing medical practice, will increase. It is essential that this is recognised and that timely improvements and developments in transition and YA care are prioritised. PPWH has an important role to play in leading this work.