This has been a year for the Charity to get back to our normal run of things and to help families to do the same. This help has only been possible with the amazing support given to us by Trusts and Companies and the very generous Scottish public. A huge thank you goes to all who have supported Kidney Kids Scotland.
As we reported in years past the Charity has been working together with a team of experts for years to try and help solve the continence problem within Scotland. In the past we have funded, with the help from Trusts equipment and post funding for different areas in Scotland. Ayrshire and Arran now have an excellent continence service, as does Glasgow. Last year’s review informed that we were proposing to fund a Band 7 Continence Nurse in Dundee and Tayside. This funding is now in place.
Each year thousands of children across Scotland suffer with bladder and bowel dysfunction and continence problems. THERE IS A CURE IF EARLY DIAGNOSED AND TREATED. Unfortunately, current paediatric continence services throughout many parts of Scotland are fragmented and can be difficult to access. A huge number of children with continence problems are being channeled into secondary care after long delays in either being referred, or waiting for appointments. The lack of provision of an educated workforce results in an inefficient system of missed opportunities for prevention, early under-treatment and growing numbers utilising costly specialist services. This leads to under-provision of services for children with bladder and bowel problems. In severe cases, children with bladder and bowel dysfunction can develop more serious long term complications if not properly treated. Not only is the medical side of this condition highly serious these children are in danger of being bullied. Kidney Kids Scotland are determined to make a difference to this service, and are delighted that the Dundee post is proving to be highly successful. Kidney Kids Scotland are pleased to say that the service in this area is showing very promising signs of being of huge benefit to the children of Dundee and Tayside who are suffering from continence problems. With an additional two staff now on board the nurse funded by our Charity is managing to provide the beginnings of a very good service in this area, treating children ages 0 – 18 years who have bowel & bladder dysfunction. The hope is that this example can be rolled out over Scotland and eventually making a difference to the whole Scottish Continence Service. Scottish children need and deserve a good continence service.
Children receiving in-centre Haemodialysis treatment (dialysis treatment for children with end stage renal failure) have to travel to The Royal Hospital for Children, Glasgow three times a week for approximately three-four hours at a time, no matter their postcode. This hospital is the only hospital in Scotland to provide Haemodialysis Treatment. This treatment is a lifeline for these children and it is therefore important for the Charity to give support to the Haemodialysis Unit in Glasgow. The Charity has supplied every Haemodialysis Machine used within the Unit and makes it a priority to update and replace these machines as and when needed. Keeping these machines in excellent condition ensures that the most chronically ill children receive the best possible treatment available. Unfortunately, we have seen an increase of children having to travel great distances on a regular basis. This can be both financially and emotionally destroying for a family and we have seen an increase in funds being distributed in this way.
The Charity is delighted to say that the Home Haemodialysis Service is now funded by the NHS. The Permanent Home Haemodialysis Nurse Specialist who set up the Home Dialysis Service in Scotland, who was initially funded by Kidney Kids Scotland is still enhancing the service daily. One of the Charity’s main goals since its inception in 2000 is to ensure that Scottish children with renal illness receive treatment as close to home as possible. This three-year project was by far the largest commitment the Charity has ever taken on at a cost of £123,000. In our view the difference it will make to the most chronically ill children could be life changing, not only for the child facing a kidney transplant but for the whole family. This service was officially launched in October 2016 with the first ever Scottish child going home on Haemodialysis.
This new approach to dialysis illustrates the way forward in health care i.e. hospital care when it is needed, but using developments in treatment to move more care closer to home. This service is now fully operational and the Charity would like this service extended to as many children and their families as possible. It is important to recognize that this does not detract from the need of the Paediatric Haemodialysis unit based within The Royal Hospital for Children, Glasgow. This home treatment is not suitable for every child and not all parents are willing, or able, to take on the huge responsibility of caring for their child receiving this intensive treatment at home. It is however totally life changing for those who are able. In addition there is now a Home Haemodialysis Machine based in another Scottish hospital with a trained nurse. This was put in place to support a child who is unable to have this treatment at home. She can however now receive haemodialysis at her local hospital to save her travelling three times per week to Glasgow.
The only other treatment, and by far the best treatment, available for children with end stage failure is a Transplant. Kidney Kids Scotland worked with Dr. Deepa Athavale producing and funding the printing of information booklets for families covering many aspects of this condition. These booklets have been very well received by other medical professionals, parents and children benefiting so much from the information provided.
Help for Scottish Families
Financial support for families is, as always, the greatest number of requests received by the Charity and these are referred by either a medical person or a social worker. These requests are an absolute priority for Kidney Kids Scotland. Approximately one quarter of the funds the Charity has disbursed goes directly to help families in various forms. It is important that families continue to receive this very valuable support as living and coping with a sick child can impact greatly on family life. This is and will always continue to be one of the main objectives of Kidney Kids Scotland. It has become apparent to the Charity during this again very difficult year just how important this support is.
Kidney Kids Scotland Family Weekend took place again this year in May and again proved to be a huge success. We had families who again enjoyed being together and sharing their problems and successes. We even had a family from London who had never met or come across another family with a child with the same condition. The child who had been brave enough to give a talk at the last Family Weekend on “Facing a Transplant” attended again this year with his parents. He was we are delighted to say celebrating his own transplant. This was the 300th successful paediatric kidney transplant in Scotland and the very first transplant in Scotland through the National Kidney Sharing Scheme. This meant the child received a kidney from a live anonymous donor. We are delighted to say this has been extremely successful.
These weekends are so valuable. Children and parents alike meet with other families facing similar problems enabling them to share issues and learn from and support each other. Consultants have reported a noticeable positive attitude in their clinics. We are very grateful to these dedicated professional people who give up their very valuable time-off to help ensure that parents have a better understanding of their child’s illness. It is always wonderful to watch the children’s faces enjoy the entertainment and crèche. The families have a fantastic break and they also come away far more knowledgeable and far more relaxed. We have booked the next weekend for May 2024.
We were again delighted to support a team of children to attend The British Transplant Games which were held in Coventry from the 27th to 30th July,. This is a chance for these very brave youngsters to take part, be normal children and enjoy themselves. Kidney Kids Scotland helps greatly towards the cost of the travel and accommodation and supplies the team with all of their clothing.
Scottish Paediatric Renal & Urology Network (SPRUN)
A Scottish Paediatric Renal Urology Network (SPRUN) was set up in 2005 to help standardise local child renal care throughout Scotland. The Charity is a founder member of this Network and has provided further funding to help towards achieving this goal. Being a member allows the Charity to be the voice of families with medical people directly. This is valuable both for the parents and for medical people alike.
This year we were again able to celebrate World Kidney Day and are also delighted to say that many golf clubs supported us once again in our Golf Day. A huge thank you goes to all who took part and for the amazing support given to us by Golf officials and members.
Financial review
The results for the year and the Charity’s financial position at the end of the year are shown in the Financial Statements.
The five principal sources of income for the Charity are:
▪ Collections
▪ Static Cans
▪ Corporate donations
▪ Sponsorship
▪ Events organised by the Charity
It is the policy of the Trustees to maintain the unrestricted reserves of the Charity at three months expenditure.
The Charity’s funds are distributed on an on-going basis and therefore no funds are retained for long term investments.
TO VIEW OUR FULL AUDITED ACCOUNTS PLEASE click HERE
