Associated Organisations

Transplants In Mind support a number of other charities committed to organ donation and transplantation. These range from donor family organisations to those where transplantation offers their members the best treatment to prolong and improve the quality of their lives. These member organisations have the right to attend our AGM and are encouraged to shape the strategic direction of Transplants in Mind.

National Kidney Federation

The National Kidney Federation (NKF) is unique because although there are a large number of kidney charities, the NKF is the only national kidney charity actually run by kidney patients for kidney patients.

Most renal units have a Kidney Patients’ Association (KPA) specifically attached to that unit. However, 26 years ago these independent charities realised that they needed a national organisation to fight their cause as renal provision was in dire-difficulty; overstretched and under-resourced. If ever there was a case of postcode provision, renal disease was it! Currently there are 78 KPAs and they come together as the controlling Council of the National Kidney Federation. The KPAs are both the ears and the eyes of the NKF and its h3. controlling force. Patients are the Officers of the NKF, the Executive Committee of the NKF and the workforce of the NKF. Apart from ten members of staff, all personnel are either kidney patients or carers of kidney patients.

Unlike other kidney charities, the NKF has only two roles – campaigning for improvements to renal provision and treatment, and national patient support services.

British Organ Donor Society

BODY was founded in 1984 by John and Margaret Evans, motivated by their son becoming a multi-organ donor (5 organs and 4 recipients). The main aims of BODY are to give emotional support and information to donor, recipient and potential organ donors and to promote the multi-organ donor card and the Organ Donor Register. The donor family membership enabled the Society to approach and promote organ donation to ICU, A&E and OT health professionals. Over 1,000 nurses attended the BODY Residential Conventions and the BODY Health Roadshow. During these events BODY quietly promoted the experiences and needs of donor families.

GIFT – the Childrens Charity

“Gift” the children’s transplant charity is the first charity to provide a support network for children and their families across all paediatric transplantation, both pre and post. We offer children and their relatives opportunities to share their experiences, provide upto date information for children, families and schools as well as continuing to raise awareness of the lack of organ donors.

We also offer children and their families the opportunity to meet up and socialise through various activities we run throughout the year, including our activity weekends and our annual walk.

If you would be keen to hear more about how we can work together, or know somebody who would, please contact Vashti sheward (Development Manager) on 07852287713 or Bradley Harris (chairman) on 01672 564181 or log onto our website

Donor Family Network

The Donor Family Network is run by donor families for donor families.

The Network has two main aims: the support of donor families and the promotion of organ and tissue donation. The Donor Family Network welcomes all donor families to become members of the organisation. The Network shares in celebrating the lives of loved ones and helps other families who have recently made the gift of organs and/or tissue to see the positive effect that decision has on the lives of others.

The Donor Family Network also works with and provides help and information to healthcare professionals, recipients and all those with an interest in organ and tissue donation.

South Asian Development Partnership

South Asian Development Partnership (SADP) endeavours to work together in partnership with existing organisations to achieve the following objectives in the area of Organ Donation & Transplantation:

To research, study and understand the social, cultural, moral and ethical issues associated with organ donation and transplants amongst South Asians.
To identify and challenge key beliefs and mindsets which act as barriers to organ donation.
To raise overall awareness of the high incidence of renal failure and the imbalance or organs available from within the community.
To encourage and motivate South Asians to become organ donors for the benefit of the community.

Transplant Support Network

The Transplant Support Network originates from a small group of people who helped each other through the ups and downs of pre-transplant illness, through to the operative stages for those lucky enough to be transplanted, and then to the new, and for some, ever-changing post-transplant situation.

Jo Hatton and her husband Phil set up the Transplant Support Network in their own home in 1995 in Keighley, West Yorkshire. Starting with no more than a couple of dozen people, the Transplant Support Network is now a nationwide organisation of volunteer transplant patients and carers, who provide emotional support and non-medical advice for others facing and coping with transplantation.

Although there is a comprehensive range of professional care already in place, it is often the case that patients and especially their carers are reluctant to take up valuable professional time with what may appear to them to be trivial matters or emotional problems. It is a fact that people pre- and post-transplant find it enormously helpful to be able to talk to and build lasting relationships with others who have been through similar experiences. In most cases these relationships create a feeling of well being both in the patients and their families.

The support that is provided by the Network is generally by telephone, but where possible face-to-face meetings are arranged. The free phone support line operates between 9a.m and 10p.m daily. Our service is available to patients, carers, family members or friends, both pre- and post- transplant, and for as long as it is needed.

Cystic Fibrosis Trust

Cystic Fibrosis (CF) is the UK’s most common life-threatening inherited disease. It is caused by a defective gene, leading to a thick, sticky mucus that obstructs the airways, the digestive system and other organs, resulting in chronic infections and inflammation in the lungs and difficulty digesting food and nutrients. Three people die every week from CF, 90% from lung disease, and the average life expectancy is currently 31 years old. Lung transplantation is a form of treatment for some patients with Cystic Fibrosis. The first successful heart and lung transplant for CF was performed in 1985. Since then, hundreds of transplants have been performed on patients with Cystic Fibrosis. Some patients still receive heart and lung transplants but most patients with CF now keep their own heart and only the lungs are transplanted.

The Cystic Fibrosis Trust is the UK’s only national charity dedicated to all aspects of Cystic Fibrosis (CF). It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with Cystic Fibrosis.

Give Life Schools Project

Give Life is a touring, interactive, theatre-in-education programme raising awareness of all aspects of organ donation and transplantation.

It is a fun and entertaining experience which presents an exciting topic in a sensitive way.

Give Life is targeted at the top end of primary schools in the UK and is linked to the national curriculum key stages for citizenship.

It uses comedy, game show techniques and drama to present the subject of organ donation. At the end of the piece the audience become part of a studio audience in a live tv show and get to voice their opinions as well.

More on Give Life Schools Project

Transplant Sport UK

TSUK organises an Annual Games in different venues throughout the UK every summer and has done so for the last 28 years. They also organise separate events for volleyball in the autumn and badminton in the spring, children’s sports-hall, golf and cricket.

Their aims are:

to demonstrate to the public the benefits of organ transplantation
to encourage transplantees to live life to the full with exercise and
social interaction
to promote awareness of the desperate need for more organ donors, without which many of the athletes would not be alive to compete.

This year’s games are in Edinburgh

British Transplantation Society

The British Transplantation Society is the professional society which represents the whole multi-disciplinary team looking after patients with end-stage organ disease. Its members are transplant surgeons, transplant physicians, transplant co-ordinators, transplant nursing staff, basic scientists i.e. research scientists working in laboratories around the UK, experts in histocompatibility and immunogenetics and trainees in all these disciplines. The BTS is a society of nearly 800 members which holds an annual meeting in a different city each year. Almost 500 registrants were recorded for the last BTS meeting.

UKTCA

The United Kingdom Transplant Co-ordinators Association (UKTCA) is a professional association which represents both Donor and Recipient Transplant Co-ordinators across the United Kingdom and Eire.

The association was founded in 1979 to act as a networking and support group for the small group of co-ordinators that existed at that time. As the success of transplantation has increased and the number of regional co-ordinators grown so has the association membership.

The UKTCA is dedicated to promoting organ donation, best practice in transplantation and supporting those working as transplant co-ordinators. The association has recently celebrated its 25th birthday!

Transplantation is an established treatment for end-stage organ failure and Regional Transplant Co-ordinators are committed to its use as a means of improving quality of life. We aim to provide education and information for all healthcare professionals and the general public to ensure a positive profile for organ donation and transplantation.

We believe that organ donation brings comfort to people coping with sudden death and therefore this should be presented as a positive option for the families of potential donors. We aim to respect the rights of individuals and to provide care and emotional support without bias.

The UKTCA currently represents all co-ordinators on a number of advisory panels and working groups. We currently have member representation on the British Transplantation Council, the BTS ethics committee, T.I.M.E. and the British Renal Society to name a few and the association takes an active part in all of the UK Transplant advisory groups.

Liver Transplant Support

Liver Transplant Support is here for all those in the process of
being considered for transplant. You can talk about all aspects of
this and discuss issues with others in similar situations through our site.

Upon joining you will be given the opportunity to discuss issues via our forum. You may wish to contact someone in particular about your reason for transplant – and even meet up with them to share stories and raise concerns.

Either way a good place to start!