Trustees Annual Report

Review of our Activities

During the year 2015/16 Kidney Kids Scotland has again provided a high level of support to families coping with a child with renal or urology problems. 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.

These families often give assistance to Kidney Kids Scotland in return 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.

Furthermore Kidney Kids Scotland would also like to acknowledge the continued support from Corporate Donations, not only financially but also in kind. On behalf of the children and families we have been able to help, we thank you.

 Our funds are raised in several ways - Events, Sponsorship, Corporate Donations, Supermarket Collections Static Cans 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. Over one third of the funds Kidney Kids Scotland  have disbursed goes directly to help families in various forms.

This year instead of holding a Family Weekend and after speaking with various medical people it was decided that the group in most need of help were the teenagers and young adults.

It has been found that teenage children waiting on a transplant or who have had a successful transplant face numerous life challenges, one being as simple as overindulging in alcohol on a night out could be enough to have their kidney transplant reject and force them back onto a life of dialysis and waiting on another transplant. This year we held a team building overnight stay with numerous activities, pizza making and a mocktail masterclass. The group included young adults who have found out the hard way the consequences of their actions and are prepared to help others going through this journey.

- The youngsters spent quality time with others they have so much in common with, this can be tremendous therapy and form life time friendships.

- The youngsters were educated on their renal illness from others the same age having been through the system.

- They were given advice on how to cope with the normal teenage temptations and how to relate and deal with this whilst having a chronic renal condition.

Kidney Kids Scotland are very hopeful that this event will have made a huge difference to the lives and outlook of these youngsters. Many of the youngsters had never really met or spent any significant time with others they have so much in common with. It was so important for them to realise they are not alone. Hearing first hand from someone their own age who has been through a transplant and then had it reject hopefully has made a massive impact. The feedback that the charity have received from the youngsters and their parents has been fantastic.

This was the first "Big Kidney Kid" event, however, the need for this project was highlighted at a very similar event we hold annually "The Kidney Kids Family Weekend",  which focuses on children with various renal conditions facing Dialysis and or a transplant and their families.

Hopefully next year we will be able to incorporate both events together.

 

The Royal Hospital for Children, Glasgow

The Charity has been asked to support the setting up of a Home Haemodialysis Service in Scotland. This service will enable children to be treated at home, making a huge difference to the child and their family and ensuring for them a more normal lifestyle. This support will take the form of initially supplying funding for three years for a Permanent Dialysis Nurse Specialist to set up the Home Dialysis Service in Scotland.

At the moment children who require Haemodialysis treatment have to travel to The Royal Hospital for Children, Glasgow three times a week for approximately three hours at a time, no matter what their postcode in Scotland. This treatment is a lifeline for these children and it is therefore priority for Kidney Kids Scotland to give support to the Haemodialysis Unit in Glasgow. Kidney Kids Scotland has supplied every Haemodialysis Machine in the Unit and the Charity makes it a priority to update and replace these machines as and when needed. The Royal Hospital for Children, Glasgow at the moment is the only hospital in Scotland to treat Haemodialysis and keeping these machines in excellent condition ensures that Scottish children with renal illness receive the best possible treatment available.

This Dialysis Nurse Specialist is now in place and hopefully Home Haemodialyis will be up and running by September/October of this year.

The move from Yorkhill has been completed and the unit in the new hospital is now fully up and running. The plain walls in Ward 3C now show “The Kidney Kid” in various sporting activities and it has been agreed by all of the staff that this has not only cheered up the plain walls but helped to lift the spirits of the children unfortunate enough to be there.

 

Crosshouse Hospital, Ayrshire

£32,723 has been provided for Crosshouse Hospital to fund a urology nurse for the children in Ayrshire and Arran. This is the third year that this nurse has been funded. The Charity is delighted to say that the NHS has now taken on this post which has proved to be invaluable and has already made a huge difference to children with urology problems in this area.

 

Raigmore Hospital in Inverness

£5000 was given to Raigmore Hospital in Inverness to help with equipment  for their new children’s ward

 

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 Newcastle 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 2016 Games will be held in Liverpool from the 28th July – 31st July.

 

Nurses Conferences

Kidney Kids Scotland has supported over the year various 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 this 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 and illustrated by Albi Taylor. 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. The 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. One of the early very positive outcomes of the Network has been the establishment of “Family Groups”. These groups allow parents who had always felt isolated, to share their problems and experiences and this support group structure lets them know that they are not in this alone.  These family groups are going from strength to strength.

 

World Kidney Day

World Kidney Day this year was March 10th.  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 Kidney Kids Scotland decided this would be the ideal date to focus the attention on this problem and got 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 and the £8,158.06 raised on the day.