My Gp thought they were 'interesting' another that it was 'way over his head'. They showed serious CO Q 10 deficiency Co Q 10 can be prescribed on the NHS but they refused. This report has never held any sway with the NHS, and yet my own GP takes an interest in Dr M's work and is broadly supportive, though doesn't supply much help. The surgery were happy to show me how to inject B12 and provide sharps bin, but wont prescribe b12 or needles (I buy these privately)
In terms of benefits I had ESA (work related group - what a laugh!), but as my husband works (although on low income) this was stopped after a year. You could get income related ESA if no other income in your family, other wise its the one year rule for all - unless you can get in the support group - not easy but doable. I didn't understand it at the time, otherwise would have fought for support group.
DLA - Dr M's report helped me enormously as did the extremely rigorous and detailed report I wrote myself - my husband also worte for the form about my condition. I included copies of all test results from Dr M etc. She charged me £45 to write the report. I got high rate mobility and middle care for a couple of years with no medical required. I was rea ssesed about a year ago and had to put in new form etc - I used the old one as a basis and paid DR M for another in depth report and included all test results again. I had improved slightly, so lost care altogether but retained mobility until 2018 (I use a wheelchair for anything longer than short walks outside).
The most useful thing I did as well was join the website Benefits and Work - they have very detailed guides availbale to members to help fill out forms and great advice and forums for memebrs to ask questions.
http://www.benefitsandwork.co.uk/
If anyone wants to ask me any questions on how to successfully fill out the forms I am more than happy to help if I have the energy at the time. The best advice is to not try and fit your illness to the form, but the form to your illness and include lots of pages of extra information - at every question describe exactly what you cant do and need help with - it doesn't matter IF YOU DONT GET THE HELP, IF YOU NEED IT YOU SAY SO (sorry caps lock)
EG I could dress myself and shower sometimes without help, sometimes with. BUT in order to be a normal functioning in the world woman with a job I would need to be able to manage daily grooming - washing hair and blow drying, shaving legs, underarms etc, applying make up. Choosing outfits and making sure they are clean, and ironed. I could not manage this every day so I said so.
Another section asks you about the things you would do if you had help. Go to town! I WANT to go swimming three times a week, in order to do this I would need someone to take me, help me shower, wait with me, help me dress and bring me home. I WANT to be able to go to yoga, same thing. The library once a week - I would need someone to drive me, stay with me, push my wheelchair and bring me back. We have to be honest on the forms about the reality of our illness. We so often don't say how bad it is. On the question can you walk upstairs? well yes, physically I can, but most days it left me exhausted afterwards, it would take me a while, I would have to rest, hold onto a support. stop at the top to regain breath, I actively avoided the stairs and needed my children to run up and down stairs for me many times a day - if you need someone to do this for you, say so! (luckily I don't have this problem now). So we have to remember not just to tick yes I can, because we cannot do it LIKE A HEALTHY PERSON WOULD.
I alos repeated myself over and over again, explaining exactly what steps would be necessary for me to be able to do this and explaining in fine detail what help I would need to complete a task such as cooking a meal.
All the best,
Justy
sorry, ranted on a bit now... you get the picture?