Review of our Activities 2019/2020
The year 2019/20 started off very well and continued that way until March 2020 when like many other Charities things became increasingly difficult. As 2020 was to be a celebration of the Charity’s 20th anniversary we had so many things planned which unfortunately have had to be put on hold, however like many other Charities we have commitments to be met.
We made the decision to furlough all but one of our staff and as you can imagine income slowed down drastically and appeals from families increased. Families with kidney problems come in the very vulnerable category and had to self-isolate. Many of these parents were not paid for not working and things became extremely difficult for them.
We must acknowledge and thank the wonderful Trusts who have supported the Charity during this very difficult end to our year. Your support has ensured that we have been able to help those families so much in need of help. We know that we have a challenging year ahead.
Once again during the whole year the efforts of the Scottish public leave us humbled. The support for Kidney Kids Scotland has indeed ensured that we were able to meet the many requests we get, not only from families but also from hospitals all over Scotland.
The Charity had again to take on, on a temporary basis the funding of the Home Haemodialysis Nurse in Glasgow to ensure the continuance of the service, this was in addition to the previous three-year funding. It has always been one of the Charity’s main goals since its inception in 2000 to ensure that Scottish children with renal illness receive treatment as close to home as possible.
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 continues to be 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 that 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.
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 the majority of Haemodialysis Machines in 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 a great 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 this way. We have secured the funding to supply the unit with another three new Haemodialysis Machines and in the process of purchasing these machines.
The Charity continues to support applications for equipment from hospitals all over Scotland. This year we are delighted to have helped the following areas – Ninewells Hospital in Dundee were given equipment totaling £24,843 and Highland and Glasgow were assisted with much needed equipment.
Our funds have been raised in several ways - Events, Sponsorship, Corporate Donations, Static Cans, Supermarket Collections and many others. We are very proud of the fact that the Charity’s achievements this year have included the following –
Help for Scottish Families
As always Scottish families who have been disadvantaged by their child’s renal illness have been a priority for the Charity and as such we continue to support them in many ways. Sometimes just a listening ear is all that is needed, putting them in touch with another family with the same problems or pointing the family in the right direction or helping them when they are financially embarrassed. It is the Charity’s view that no parent should have to worry about potential financial problems in addition to worrying about their sick child. This year, there has been an increased number of small donations to families who have been struggling financially. Although some of these assistances have been small in monetary value, the impact this has on a family is huge. They know they are no longer on their own and that worries can be shared. To this end, efforts have been made to ensure that every family who either must travel a distance to The Royal Hospital for Children, Glasgow or has to take time off from their job to be with their child can do so without having to have the stress of wondering where the money is coming from.
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. 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 the Charity. It has become apparent to the Charity during the last three months of our year just how important this support is.
It was brought to our attention this year that the continence service throughout the country is sadly lacking. Children are having to wait for long periods of time just for an appointment. We were approached by a Paediatrician in Dundee who has highlighted the lack of service in the Dundee and Tayside area. Not only was there a lack of expertise to attend the children but they were very short of suitable equipment to diagnose various conditions. The Charity has been fundraising to be able to supply this equipment and I am delighted to say that this is now all in place.
Kidney Kids Scotland staff are in constant contact with renal consultants and medical support staff from all over Scotland as well as families directly impacted by the issues of renal disease in children. Following on from these discussions the Charity feels that there is a huge need for parents to continue to be better informed of their child’s condition. Mums and Dads often feel very intimidated by “clinical” conditions and do not ask the questions they feel need answered.
Our Annual Family Weekend for 2020 was booked at Westerwood Hotel as usual but unfortunately had to be cancelled.
We regret this so much as the weekend is a chance for families to spend time with one another in a relaxed friendly atmosphere. 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 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 fantastic break and they also come away far more knowledgeable and far more relaxed. We sincerely hope that a Family weekend will be possible in 2021
I regret to say that the 2020 Transplant Games were cancelled.
The Charity has supported over the year several nurses from all over the country to attend “Nurses Conferences”. These nurses have to attend educational conferences in their own time and at their own expense. The Charity believes the knowledge gained at these courses is essential for the welfare of the children and again promotes consistency of treatment and care across Scotland.
The Charity was delighted to sponsor a Urology Booklet written by Dr. Salvitore Cascio. This book continues to be extremely popular and educational for children who have urology problems. It was decided to adapt this booklet for use in schools. Education in this is extremely important for youngsters and this booklet is the ideal tool to do this job. Ongoing copies of this booklet are being supplied to hospitals all over the Country
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.
World Kidney Day
World Kidney Day this year was on 12th March and everything was in place for a bumper year. This day is aimed not only at raising awareness of kidney disease but also to highlight the very real problem in a decline of donors.
Once again the Charity decided this would be the ideal opportunity to focus attention on this problem and to get companies in the Falkirk and Stirling areas behind this. The Falkirk Herald was extremely supportive and ran a campaign encouraging companies to get involved. Another plus side of this campaign is the increased awareness of Kidney Kids Scotland.
Unfortunately, due to the lockdown in March monies from World Kidney Day have sadly been much less than is normal. Several companies did still support the Charity however it was not the success that it had promised to be.
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:
▪ Static Cans
▪ Corporate donations
▪ 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.