Ms Vicky Daybell
The Princess Royal Trust for Carers

Mrs Joan Cox
The Pituitary Foundation

The Pituitary Foundation has received a three-year grant from the Department of Health to develop a Carer Support Project. This will provide carers with support and services to maintain their health and the information they need about the health and medication needs of the person for whom they are caring. The work is being co-ordinated by the recently appointed Carer Support Project Manager, who is based in the Bristol office of The Pituitary Foundation, and includes:

1. Influencing the existing support and services available within The Pituitary Foundation to become more carer-focused.
2. Developing links with other organisations, particularly carer organisations, raising their awareness of pituitary disease and encouraging pituitary carers to access their services. (Recognising that carers have many shared needs irrespective of the medical condition of the person they are caring for.)
3. Staging Carer Workshops specifically tailored to meet the needs of pituitary carers.

Given the Project's emphasis on working with other organisations and the importance of pituitary carers learning about local carer support within their own areas, we were delighted to welcome Vicky Daybell to speak about the work of the Princess Royal Trust for Carers (PRTC).

Vicky started by outlining the difficulties inherent in using the term 'carer'. She acknowledged that all caring situations were unique and take place primarily within existing relationships: parent/child; partners/spouses; siblings; friends and neighbours. Because the word 'carer' is not one that many people would use about themselves they may miss out on the help available.

Vicky then outlined the work of the PRTC, covering the following main points:

• The Princess Royal Trust for Carers now co-ordinates a network of over 100 local carers' centres. Belonging to a national network provides local centres with access to expertise, training, knowledge and support, and the combined voices of more than 100 organisations inevitably have more clout nationally than a single stand-alone centre. The main objectives of the PRTC now are to grow and develop the network of local carers' centres; to develop high quality services; to identify and fill gaps in service provision and to continue to work at national level to influence policy.
• There is no standard model of a PRTC carers' centre. All are different and unique according to local need and circumstances. However, all provide the following four core services whether by phone, drop-in arrangements, or outreach:
  • Information and advice.
  • Emotional support.
  • Advocacy.
  • A voice for carers in the local community.
• All PRTC centres also have strong local links with both statutory and voluntary agencies.
• Additional services are identified and developed according to the needs expressed by carers. About 50% of PRTC centres provide specialist support for children and young people with caring responsibilities. A few have developed expertise in supporting carers of people with mental health problems.
• All PRTC carers' centres are run according to a set of shared values. These state that carers' services should:
  • Be shaped by carers' needs.
  • Be of high quality.
  • Value and endorse individual carers' choices - carers have a right not to care, as well as to be supported in order to continue to care.
  • Be accessible to people from all backgrounds and from all communities.

Vicky finished her presentation by urging delegates to contact their local carers' centre if there was one. Information about local PRTC centres is available from The Pituitary Foundation or on the Internet at www.carers.org.

The workshop participants raised a number of interesting comments and questions on a range of topics. These included carers experiences of being less involved by service providers after the patient's transition from children's to adult services, the benefits of respite provision for carers and the types of support and advocacy available from carers centres.