"Services for epilepsy are complex"

About: Heartlands Hospital / Neurology Queen Elizabeth Hospital / Neurology

(as the patient),

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.

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Response from NHS West Midlands We are preparing to make a change

To address your concerns in relation GPs' knowledge, and provide reassurance for the future, I wish to advise that:

• GP commissioners will be supported by Primary Care Trusts in taking on further commissioning responsibilities over the next few years. This will provide an opportunity for them to develop their commissioning skills.

• The first of series of commissioning packs to assist GP commissioners has now been published. These are tools to help commissioners improve the quality of services for patients, through clearly defined outcomes that help drive efficiency by reducing unwarranted variation in services. It is expected that the packs will evolve over time as GP commissioners have more control in designing services and clarity on their support needs.

• As part of the recent White Paper, the Coalition Government has also set out how the NHS will lead an information revolution, arming people with comprehensive information and data on all aspects of their health and adult social care so they can take control and make informed decisions. This will need to take into account patient’s differing needs.

• There is an increasing move towards working with patients, in order to plan, design and monitor clinical services, by seeking their views on their experiences. Part of the rationale for moving commissioning responsibility to GPs, is that they are well placed to seek patient views and to understand patient needs.

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Update posted by Vegan (the patient)

I am replying to the response made to my story, but I feel that this does not answer the suggestions I put forward in my initial story Services for Epilepsy are complex.

All it states is what I already know following the attendance at the FTGA event in Manchester on the 6th October on behalf of the Heart of England NHS FT of which I am a Public Governor.

GP's will need to be open all day to accommodate services such as these, and most GP's know nothing abouth these conditions and are too frightened to even change medication without a Specialist having written back to them first. This is what I am getting into?

Personally I do not feel that GP's will be up to being able to manage specialised services such as these.