Living with Sickle Pain

A report just published presents the results of recent research with 57 individuals living with sickle cell disorders from across Greater London (October 1998, Department of Public Health Sciences at Guy's, King's and St Thomas' School of Medicine). For copies of the report please contact the Sickle Cell Society directly or phone 020 8961 7795.

Some major findings:

• Sickle cell patients suffer neglect, stigmatisation and both under-treatment and over-treatment of their pain in hospital
• Many people manage their sickle pain at home, but receive little help or support from GPs or community services
• Serious lack of support available in the community after hospital discharge means that sickle cell patients commonly re-admit within a short time.

This research provides new evidence of how health services in London are failing sickle cell patients, which is of particular concern given the current re-structuring of the NHS and GPs' lack of knowledge and interest in sickle cell. MPs and health policy makers must act to ensure that services are improved to meet the needs of the growing sickle cell population.

What can I do?

Make your views known! MPs do take letters from the public seriously, especially in large quantities! You may wish to write to your local MP, the Black and Asian MPs, and/or the Secretary of State for Health, Frank Dobson. A form letter is attached, or you can compose your own. You could also visit your local MP at his/ her surgery. To find out who your local MP is ring the House of Commons information line on 020 7219-4272. The Black and Asian MPs are Diane Abbott, Bernie Grant, Paul Boateng, Oona King, Piara Khabra, Ashok Kumar, Mohammad Sarwar, Harsha Singh, and Keith Vaz. The address for all MPs is House of Commons, Westminster, London SW1A 0AA. Feel free to copy the letter below and distribute widely!

Return address:

Dear

I'm writing to express my concern about the issue of healthcare services for sickle cell disorders. This is a serious genetic condition which affects over 9000 people in Greater London alone, but which continues to be neglected by politicians and policy makers. Experiences of extreme and unpredictable pain is a common aspect of sickle cell disorders. Most people affected are of African or Afro-Caribbean descent.

A recent report, `Living with Sickle Pain' (published October 28, 1998 by the Department of Public Health Sciences, Guy's, King's and St Thomas' School of Medicine) has provided new evidence of how sickle cell pain is inadequately managed. The report highlights how sickle cell patients are often provided with sub-standard care in hospital due to continuing mistrust and stigmatisation by health professionals. There is a serious lack of primary and community care services for this population, although sickle cell is a chronic disease. Many people try to manage their pain at home with little or no support; others spend long periods of time in hospital.

You should already have received a copy of this report which has been sent to all London MPs. I urge you to read it, and to put pressure on the government to act on its recommendations.


Yours sincerely,