PAEDIATRIC RESEARCH

Kidney Research Yorkshire was left nearly £300,000 in the will of Mary Strang, it is still unclear why, but Mrs Strang, from Bailiff Bridge near Brighouse, stipulated the money must go to the charity to help treat babies and toddlers with kidney disease who were being treated in Leeds. We agreed with the Trustees of the Estate that we could use the legacy to fund a Clinical Psychologist, and a Clinical Nurse Specialist at the Renal Paediatric Unit at Leeds Hospital.

Simone Friedl, the clinical psychologist we funded supported children, parents and siblings going through dialysis and with issues around transplants.

Kidney Research Yorkshire asked Simone to update on the work she was doing.

“The main areas of my job centre around managing the psychological “side-effects” of a chronic or acute medical condition and its management. Renal diagnoses often entail a long-term or chronic course thus requiring families to adjust to the reality of the diagnosis and learn the skills necessary to carry out various forms of treatment at home. For the children and young people themselves they are often faced with various, repetitive, invasive tests that most are naturally frightened off – nobody like needles or blood tests!! My job is broadly to a) help children/young people (YPs) to adjust to the reality of their diagnosis, b) help them learn and develop coping strategies to deal with tests and their treatment, c) help them develop resilience to deal with the significant demands arising from their condition and its treatment, including issues around adherence. (Adherence is the degree to which patients take their medicine as directed).

I’m trained in different therapeutic techniques, including CBT, and over the last 3 years I have received further training in ACT (acceptance and commitment therapy) and compassion-focussed therapy- this gives me a tool kit to help tackle specific problems, ranging from procedural distress (needle phobia) to low mood, anxiety problems, adjustment issues, adherence problems to name a few.

I really enjoy my job – as you can see it’s so varied and gives lots of opportunities for developing things further. I’m lucky to be part of a lovely team who value my work and work collaboratively. Finally, while I often see people who are deeply affected by the impact of their/their child’s renal condition, and it can be hard to see it -after all I’m a parent myself, I feel it is a privilege to walk their journey with them – often from the child’s diagnosis to the point where their condition is manageable/ in remission / post-transplant and seeing how young people can flourish despite the demands on them is very rewarding. I’ve had some really lovely feedback from families and it is nice to know that my work is valued.

If I had one thing to wish for – it would be to have more time to do more”.

Sophie Yates, Clinical Nurse Specialist helps families whose child is on peritoneal dialysis overnight at home, by visiting them at home and providing them with support.

Sophie gave us this update:-

“I continue in my role primarily training and supporting children and their families on Peritoneal Dialysis. I also help support some of our chronic patients who are not yet at the point of dialysis but may have multiple needs and require support. The main objective of my role is to keep the children and families at home as much as possible, and reduce the amount of time visiting hospital.

As part of my role I organised two nights away for some of our haemodialysis families and also some of the teenagers (without parents) to Drayton Manor, this was great for our patients and families to meet each other and get a better understanding of the different types of dialysis and transplants. It also allowed some of our families who may not normally get an opportunity such as this to have a weekend away”.

Dr Maggie Fitzpatrick gave us this report on an eight year old kidney patient being treated with grant support under this legacy.

“She is generally doing very well. She had a deceased donor renal transplant in August 2013 having been on peritoneal dialysis for some time before that which was obviously quite a challenge for her and her family. The transplant is now functioning well following a few complications in the early post transplant period. She was 7 in September and is attending school regularly, has a good appetite and is now thriving which is great news. She has unfortunately has some problems recently with urinary tract infections which we are managing but the transplant is still working well for her. She does need to take a number of medications to prevent rejection, needs to maintain a good fluid intake and is also on a small dose of a prophylactic antibiotic to help prevent urine infections”.