"Services for epilepsy are complex"
Posted by Vegan (as ),
I have suffered with epilepsy for 49 years and have not noticed much if any change in the service provided for neurological conditions in all this time.
In relation to GP Consortia, I would like to know how GPs are going to manage long term conditions because they require many apppointments, lots of time, and tests such as EEG, CT scans, ambulatory monitoring and I cannot see that GPs are going to be up to all of this, as well as repeat prescribing all of the time.
Following the event of the FTGA in Manchester, I just feel that the lack of knowledge GP's have around this area, especially Neurology because it is so complex, just will not be able to be commissioned by GP's.
I feel that patients will have to be involved in helping set the clinical pathways for these services, and I am willing to assist in this for the Birmingham area. I represent the Heart of England NHS FT, because it is the patients with the experience of everyday living with the condition and also no two people are the same.
Some suggestions for thought:-
Do you feel that patients would help by attending meetings in the areas to try and work out a clinical pathway?
Lack of information on these areas is common in all areas, and such as Birmingham being multi-cultural would require literature available in many languages?
Simple things such as women and the menopause for people with Epilepsy. No information is available, but for people who have been pregnant and can have HRT there is? Why?
Due to all the falls as a child with the 800+ seizures a year I had I now have a degenerative spine which requires chiropractic treatment, not available on the NHS. This treatment along with Reflexology keep me mobile but I require this every fortnight. Not on NHS.
I am pretty well controlled at present but the menopause is having an impact, but it took over 30 years to get me reasonably stabilised.
Just by this story I am sure you can tell that it is not a simple solution to this type of work.