"Palliative Care Support"

In 2020 , we were referred to the palliative support team at the sick children hospital in Edinburgh.  Our daughter had numerous health conditions which were life limiting from birth and we were in and out of hospital on an ongoing basis.

After one of our numerous admissions , we were referred to the palliative team. We didn’t know what to expect being referred to this team, did this mean our daughter was end of life? After meeting with the team we realised that there were there for support, and we wished we had been referred earlier.

The team were very reassuring and explained their services, and the help they could offer.  We used the children a hospice and our daughter also received respite care. We had already looked over an Advanced Care Plan (ACP) and we were aware one day we would have to discuss end of life, never a subject anyone wants to discuss .  

In September 2020 our daughters life was saved by the crash team and she spent time in intensive care. After a month in hospital for moved to the hospice for support.  Our daughter bounced back but this was the start of her deterioration.

From August 2021 we were in hospital every month, we relied so heavily on the palliative team for support and had meetings to discuss our daughters health and make changes to her ACP. The palliative team picked up with consultants, community nurses and school about her health  changes and how they could support everyone, especially the family.  

Every admission was getting harder and all the time our daughters health was changing 

The palliative attended outpatients appointments with us, helping organise oxygen to the house and school and being there constantly for us . 

January 2022 was the major change for our daughter, and from then we knew that life was more precious than ever. From then the palliative team were kept busy making changes to end of life care plans and, supporting us, anytime we were 999 into hospital someone from the team was in hand to support us and discuss next steps.

July 2022 was our last admission in hospital and a turning point as from then onwards after very hard discussions the hospital could no longer treat our daughter as it wouldn’t be in her best interests, 

Discussions with the palliative team and changes to the ACP were happening on a daily basis as our daughters health was deteriorating very quickly ,

Our end of life wishes, were not to be in hospital, but at home with the support of the palliative team , 

The beginning of August 2022 , discussions were around that our daughters health was on a very thin line and she was very vulnerable. Plans were made and support put in place. You don't have a crystal ball on timescale but we did think a few months 

Unfortunately that wasn’t the case and our daughter started end of life care on the toward the end of August 2022 and passed away peacefully at home.

The palliative team knew we did not want her to suffer at the end and this was one thing they ensured she didn’t. The plans and organisation from them made this horrendous time, was peaceful and very dignified.  

As a family we couldn’t have managed/coped without them over the years. We had a great relationship with them and they have supported our family over the last couple of years.  

I think you are afraid when you get referred to the palliative team, but the title puts you off, we would never of coped without them and we are still receiving help from them. 

For us, having a ACP helped have the plans in place for end of life, as truthfully I don't think we would of been able to make plans for the funeral without having this documented.

The palliative team are wonderful human beings who have a very tough job but they made it very easy for us.

Life will be different now for us but we still have the support of the team , never be afraid if you get referred it is a wonderful support that you need.