Five Adult Nurse Specialists are funded by DebRA and provide a service to all adults with epidermolysis bullosa (EB), who are over sixteen years of age and resident anywhere in the United Kingdom. This service is also extended to families and carers. A further Adult Nurse Specialist, funded by the NHS, works closely with the DebRA team.
We recognise that everyone with EB is unique, an expert on his/her own condition and its management and we acknowledge that our most important lessons regarding EB and its effects are learnt from those who are affected by it. We aim never to be prescriptive in the service that we provide but to give people choices and support for the decisions they make and to provide a service which is both accessible and flexible in responding to individual needs. We also aim to provide clinical knowledge that is up to date and based on reputable research.
Listed below are some examples of areas of our work;
- Providing information to hospital personnel regarding EB and the particular needs of individuals with EB.
- Provision of information regarding DSS Benefits including Disability Living Allowance and support in processing claims.
- Assistance in accessing appropriate medical and other healthcare services.
- Attending specialist EB clinics around the UK including St Thomas' Hospital, London; Edinburgh Royal Infirmary; Aberdeen Infirmary and Solihull Hospital near Birmingham.
- Visiting those people who are hospital inpatients.
- Advising staff at the DebRA offices of the needs of those with EB.
Who we are:
Senior EB Nurse specialist Liz Pillay 0208 810 1265
Liz Pillay is the Senior EB Nurse Specialist for the South, covering the UK south of Birmingham. Liz is a Registered General Nurse, Midwife and Health visitor with over twenty five years of hospital and community experience. Liz has held senior posts including those of Sister for an intensive care unit; Health visitor and Counsellor for those affected by the genetic conditions Sickle Cell Disease and Thalassaemia. Liz has successfully undertaken a Certificate in Counselling Course and EN B49 Tissue viability Course. She is based at home in West London.
Adult EB Nurse Specialist Elizabeth Abercrombie 01698 477777
Elizabeth Abercrombie is an Adult EB Nurse Specialist for Scotland.
She can be contacted at the DebRA office in Hamilton on the above telephone number or on 01383 844841 when working from home.
EB support nurse Jennie Hon 01489 557 486
Jennie Hon is the EB Nurse Specialist, assisting Liz in the South. Jennie has worked for DebRA since November 2001. She is a registered nurse with experience in care of the older person, community nursing and neurology. She is currently studying part-time for a Bsc in Tissue Viability at the University of Hertfordshire. Jennie is based at home in Hampshire.
EB support nurse Pauline Graham-king 01434 240791.
Pauline Graham-King
is the EB Nurse Specialist, assisting Jane Clapham in the North. She has been with DebRA since November 2001. Pauline travelled extensively following qualification as a nurse in the Queen Alexandra's Royal Naval Nursing Service. She has had a varied career both at home and abroad, including posts in Accident and Emergency, Opthalmic, Research, Hospice and Community Nursing and at NHS Direct. She has a Nursing Degree and Opthalmic Nursing Diploma. Pauline is based at home in Sunderland.
EB Nurse specialist Jane Clapham 0121 7057373.
Jane Clapham works with Pauline Graham-King covering Birmingham North to the Scottish Borders. She works from her home in Solihull where she lives with her family. Jane qualified as a nurse in 1977. Following a spell in Australia and USA she returned to the UK to work as an administrator in general practice and while her children were young she taught at a college of further education. Returning to nursing in 1999, Jane worked in acute surgery and pain management research and in 2006 she completed her nursing degree.
For more information please click on the highlighted names or the contact details below
