Trustees Annual Report

 

Review of our Activities 2017/2018

 

Kidney Kids Scotland (the Charity) 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.

In addition we would like to thank families who have given assistance to Kidney Kids Scotland by holding events, running marathons and generally helping the Charity in many different ways. We would like to say thank you to them for all their efforts.

The Charity has this year once again supported the Home Haemodialysis Service by continuing to supply funding for a Permanent Home Haemodialysis Nurse Specialist who has set up the Home Dialysis Service in Scotland. 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 project is by far the largest commitment the charity had ever taken on. A nurse for three years to set up the service and the home haemodialysis machines at a cost of £123,000. We felt the difference that it would make to the most chronically ill children that we help would 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 – hospital care when it is needed, but using developments in treatment to move more care closer to home. For children and young people Kidney Kids Scotland are of the opinion that this is a quality treatment that fits in with the needs and interests of the patient. This service is now fully operational and the charity would like to extend this service to as many children and their families as possible. The charity would like to point out at this stage that this does not distract 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 what 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 Kidney Kids Scotland 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 the charity helps receives the best possible treatment available.

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, Edinburgh, Dundee and Glasgow. One of the requests from all over the country was for an “Accuvien”. 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 often takes multiple attempts before finding a good vein, also 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 now in place in many hospitals throughout Scotland is a very small and portable hand held device. It 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. This is something that has been proven to be invaluable for those who have lots of bloods taken especially babies and very young children but also the nurses.

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 Kidney Kids Scotland 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. 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 again 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 Kidney Kids Scotland have 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 the main objective of the Charity.

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 Kidney Kids Scotland felt that there was 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.

This year we again held a “Family Weekend” at Westerwood Hotel, Cumbernauld. The Charity normally concentrated on families with nephrotic syndrome and those facing dialysis or a transplant, however Consultants in Glasgow brought to our attention that there were families not in these brackets in need of support and therefore we had to widen this catchment. We were delighted to welcome twenty four families this year.

The families benefited from the expertise of the many medical people who came along 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 and 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 and for children and parents alike to 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.

Kidney Kids Scotland also organised a “Big Kidney Kid” Weekend. This weekend was focused on teenage children who have had a transplant or just about to receive one to help them with the numerous challenges they face on a daily basis. The group included young adults who have found out the hard way the consequences of their actions by simply overindulging in alcohol. They shared their stories and really connected with each young person. The families were welcomed at the Macdonald Forest Hills Hotel in Aberfoyle. They enjoyed a family highland games and then the youngsters bonded over a sunset paddle on the loch and a BBQ around a campfire. The weekend was a tremendous success.

Continence Service

The Charity has spent a great deal of time over the past year working with Consultants and nursing staff all over the Country to improve the continence service in Scotland. There are a huge number of children being failed by this service which needs completely re-vamped. This is a huge undertaking with a challenging amount to be done, not something which is going to be fixed quickly. Scottish children deserve to receive the best service possible. To this end our Manager Sheena Dunsmore MBE has attended meetings all over the country and along with Dr. Catriona Morrison and Mrs. Jean Davies attended a meeting at the Scottish Parliament with the then Health Minister Shona Robinson. It is hoped that this meeting which seemed extremely positive at the time will have the impact that was promised.

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 Birmingham and the children had a fantastic time, The Charity again provided all of the team’s clothing and contributed 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. Three of the children have also been chosen to attend the World Transplant Games next year.

The 2019 Games will be held in Newport.

Nurses Conferences

Kidney Kids Scotland 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

Kidney Kids Scotland were delighted to sponsor a Urology Booklet written by Dr. Salvitore Cascio  This book is proving 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 standardize 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 Kidney Kids Scotland 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 8th.  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 the 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 on board. Another plus side of this campaign was the increased awareness of Kidney Kids Scotland. The amount raised on the day was £11,868.43

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

and

Big KK Weekend

Support

Undertaken

directly

TOTAL

Funds Disbursed

£24112

£69,426

£1,639

£3,263

£18920

£85164

£202524