Issue - meetings

To receive evidence fromthe following groups and organisations on their perception of services that are provided to support vulnerable people with long term conditions:

·        Barnet, Enfield and Haringey Sickle Cell Support Group

·        The Alzheimer’s Association

The Panel received evidence from Samantha Greaves, Comfort Rainier and Vivienne Mensah from Barnet, Enfield and Haringey Sickle Cell Support Group.  Ms. Greaves reported that she had previously been admitted to hospital approximately every six weeks during the winter.  Many of these admissions had been by ambulance. She was frequently in pain.  There had been a great improvement in service when the North Middlesex hospital had introduced its outreach service where nurses went out to visit patients who were experiencing problems.  However, she no longer used the outreach service.  She had changed her diet and now did not use the drugs that were previously administered to her by the nurses.  She had done this because she did not like the side effects of them.  Since making these changes, she had not been admitted to hospital for 3 years. 

Sickle cell was a condition that caused the red blood cells to become misshapen.  The cells became clogged around the joints, preventing oxygen flow and causing pain and organ failure.  When people had crises, these were normally dealt with by administering painkillers and blood thinning drugs.  Blood transfusions could also be required.  The condition was hereditary.  Free blood screening was available.  The prevalence of the condition was become greater due to mixed race relationships.

Ms. Mensah reported that her 15 year old son had the condition.  Although a Haringey resident, she received her services from Hackney as she had built up relationships with health professionals through them.  Her son had to receive blood transfusions regularly which entailed her driving to the hospital regularly.  Hackney were now thinking along similar lines to health professionals in Haringey and looking at providing an outreach service. 

Ms. Greaves felt that the service could be improved further if there was a greater availability of nurses.  At present, patients were only able to have two visits in 24 hours and had to wait till a nurse was available.  The nurses were very busy and were not available overnight.  The nurses were often required to administer opiates to help control pain and these could only be given by appropriately qualified professionals.   She had previously needed large doses of opiates but had weaned herself as she did not like the side effects or the feeling of being constantly high.  She now used complimentary medicines and these had enabled her to stay out of hospital for three years. 

The support group had been set up in 1985 and was the first in the country.  It was a voluntary group and received no funding.  They were currently trying to register as a charity. They had over 800 members and helped to signpost services and increase awareness of sickle cell disease.  In particular, there was a need to increase awareness amongst health and social care professionals and especially the fact that cold weather could trigger it off.  They had good links with the medical team at the George Marsh Centre.  They were trying to get into schools to increase awareness amongst young people.  ...  view the full minutes text for item 22