Trustees Annual Report

 

Review of our Activities 2018/2019

Kidney Kids Scotland Charitable Trust (the Charity) have had another wonderful year which has only been made possible by the generosity of the Scottish people on so many levels. Firstly, we would like to acknowledge the continued, amazing support from the public and business community of Scotland, not only financially but also in kind. On behalf of the children and families we have been able to help, we thank you. We are amazed every year at the efforts of the families who have a child with a renal illness who have given assistance to the Charity by holding events, running marathons and generally helping in many different ways, we would like to say thank you for all your efforts.

 

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 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 has made to the most chronically ill children is 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 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 were delighted to be able to supply two new Haemodialysis Machines this year.

 

The Charity continues to support applications for equipment from hospitals all over Scotland. This year we are delighted to have helped fund equipment for the following areas – Aberdeen, Ayrshire, Borders, Highland, Dundee and Glasgow.

The Charity received requests for “Accuvien” machines. This machine not only shows where the veins are but also the depth at which they are, guaranteeing success first time. It’s like a little ultrasound for blood veins which in itself is a distraction for the child.  Children who have renal and urology illness have to have regular bloods taken to assess their condition. Bloods being taken on a regular basis can be an extremely stressful and painful process for the child and baby patients. Little veins are very hard to find and it often takes multiple attempts before finding a good vein. If bloods are taken regularly, the veins collapse which makes the process all the more difficult. The children also feed from the anxiety coming from the parents and also the nurses performing this process. As the child gets older many of them can develop a severe anxiety of having bloods taken. This wonderful new technology, a small hand-held portable device, is now in place in many hospitals throughout Scotland.

 

Our funds are 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 has to 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 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 are working with the consultant to improve this service.

 

Family Weekend

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 was once again held at Hilton by Doubletree, Westerwood, Cumbernauld. We were delighted to welcome 25 families who once again benefited greatly from the expertise of the many medical people who came along voluntarily to help.

 

The support we receive from specialists at all levels is extremely encouraging. A crèche is employed by the Charity to allow parents to attend the sessions without distractions knowing that their child is well cared for. The weekend is also 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 was wonderful to watch the children’s faces enjoy the entertainment and crèche. The families had a fantastic break and they also came away far more knowledgeable and far more relaxed.

 

Transplant Games

 

Once more we have had the pleasure of seeing a team of Scottish children take part in the Transplant Games. This year the Games were held in Newport and the children had a fantastic time, The Charity was delighted that the teams clothing was all donated this year which meant that the Charity could contribute greatly towards the cost of accommodation and travel. This is a chance for incredibly brave youngsters, who have had a transplant, to show that their condition is no barrier to achievement and also, just as importantly, to enjoy themselves. The children came home with 4 Gold, 5 Silver and 57 Bronze medals.

The 2020 Games will be held in Coventry.

 

Nurses Conferences

 

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.

 

Urology Booklet

 

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 March 14th. 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 was the increased awareness of Kidney Kids Scotland. The amount raised on the day was £15,307.98

 

The following is a breakdown of Kidney Kids Scotland’s Funds Disbursed during the year

 

Distributed to Families all over Scotland

Equipment and support for Hospitals all over Scotland

Support for Nursing Courses

Funding  the Transplant Games

Family

Weekend

 

Support

Costs

TOTAL

Charitable Activities

£10,960

£67,671

£884

£20,652

£13,614

£88,167

£201,948

 

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 three 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.