Do you remember the post we put up about Damien running the Loch Ness Marathon in September of this year? Well he did it and raised a staggering sum of money to be distributed among three charities; one of which is the RVH Liver Support Group.

Mairead, Damien’s wife, received a life saving liver transplant approx five years ago and Damien wanted to give something back. Well, he has, by way of a donation amounting to £3885.45. We would like to thank him most sincerely for this and we hope that Mairead continues to do well.

Thankfully, after an enforced break due to Covid, we were able to revisit King’s once again in November, to renew acquaintances, establish new relationships and provide the staff there with updates on the Group as of 2022.

Kay and Jim spent four very full and rewarding days in London, during which they reviewed some of the accommodation used by patients and carers when they go for treatment – a very worthwhile exercise which allowed them to consider distances and travel options and times to King’s, and the availability of dining and other options nearby.

Considerable time was spent each day meeting with the transplant coordinators, consultants, surgeons, Todd Ward staff and others whom patients and carers might encounter during their time in King’s.  A meeting with some of the committee members from the LISTEN patient support group in King’s was most welcome, and much was learned on both sides around patient care, particularly concerning those patients from Northern Ireland.

Kay and Jim were also fortunate to be able to spend some time with a local patient who had been transplanted immediately before their visit, as well as his partner, and to call in with another local man who had returned to King’s for a post-transplant procedure.

Much was gained during the visit, thanks in no small way to the fantastic support provided by King’s Senior Social Worker, Paul McKie, and we look forward to being able to return again later in 2023.

Committee members of the Liver Support Group have been out recently gathering up lots of pressies to make up hampers for the child, adolescent and adult liver patients who are currently in hospital. They have all been delivered over the past few days to the wards and we would like to take this opportunity to sincerely thank all of those involved in “Operation Santa” !!

As well as supporting patients with various liver conditions the Liver Support Group also provides funding for research into liver related issues with the outcomes of said research projects ultimately helping those living with liver problems.

Just recently the Group has offered funding to Suzanne Lester, the advanced Physiotherapy  Practitioner at the RVH Liver Unit, and this is her update….

Background

The PREPARE project began in October 2020 with an application to the Health and Social Care R&D Fellowship which was co-written by physiotherapist Suzanne Lester and 3 patients from the Northern Ireland liver transplant waiting list.  Approval was granted in February 2021, which enabled the PREPARE project to commence its 3-year journey.   The project team consists of 5 patients from the liver transplant community here in Northern Ireland, Suzanne Lester PhD Fellow and physiotherapist, Professor Judy Bradley, Dr. Bronwen Connolly and Dr. Johnny Cash.

Aim
The project aims to co-design and develop a remote prehabilitation (support) programme to help patients maintain their best health, body mass and muscle strength while on the transplant waiting list.

To achieve this the PREPARE project will deliver 4 studies.
1. Study 1 – a literature review which will consider the available literature to understand what the prehabilitation programme could include.
2. Study 2 – focus groups with patients, caregivers and clinicians.  These groups will provide an in-depth understanding of what patients’ caregivers and clinicians feel the remote prehabilitation programme should include in order to support and help patients through the transplant waiting period.
3. Study 3 – co-design workshops where Suzanne Lester the researcher together with patients, caregivers and clinicians will develop the prehabilitation programme.
4. Study 4 – delivery of the intervention to a selection of patients who are on the waiting list.

The Liver Support Group have been integral to the progress of this research to date by helping to recruit patients from both NI and the UK to the PREPARE study.  They have also very generously donated funds to provide an online programme to allow the intervention to be delivered remotely.  Their support has been invaluable and will be crucial in progressing the project to the next stage of the co-design workshops.

Our children & young people patient carers Patricia and Rachel were delighted to accompany RBHSC specialist nurses Stacey Watson and Lesley Roach on a 3 day visit to Birmingham Children’s Hospital  liver unit from 9^th to 11^th November. The much-anticipated trip through the long months of covid restrictions, was finally able to go ahead and has proved as beneficial as hoped for.

Meeting with professionals from the multi-disciplinary liver team from clinicians, nurses, physiotherapist, psychologist, play therapists, family support and youth workers has given such an insight into the excellent care children and young people from NI with a liver condition are able to receive at Birmingham Children’s. Putting faces to names and seeing how that journey for families who find themselves on Ward 8 begins and develops has been invaluable.

With the intention and motivation for the visit being how the team at RBHSC and our liver support group could improve children and young people’s care here, the plans for new training opportunities for the Belfast team and the LSG facilitating virtual link ups between Birmingham staff and families here we look forward to reaping the benefits.

Following the trip Stacey and Lesley expressed their gratitude with the words below:

“ Just returned to work today after our trip with yourselves.

I just wanted to email to say Thank you so much for the amazing time we both had.

We hope to utilise everything we have learnt and this will only make the service here better for our children and families, this was such a useful trip. “

Commuters to Birmingham railway station were greeted this morning with a beautiful mosaic celebrating 160 years of looking after sick kids. The 7m x 8m mosaic is located on the floor in the station’s main concourse. It depicts the red brick iconic building and is lovingly surrounded and adorned by over 850 images of young patients, past and present. It is particularly poignant to Rachel, one of our esteemed committee members, because it contains a picture of her late daughter, Lucia, who was treated there. In the larger picture (opposite) Lucia is featured at the bottom right of the mosaic and has been highlighted.

Please click on the link below to read the full story on the hospital that transplants all of our child and adolescent patients.

https://www.bch.org.uk/news/mosaic-installation-birmingham-new-street-station-birmingham-childrens-hospitals-160th-anniversary?utm_source=Twitter&utm_medium=social&utm_campaign=Orlo