Yesterday myself and my nurse from my care agency met with our local MP. I wasn't sure what to expect as a) I'd never met with and MP before and b) I felt there wasn't much else that could be done and that I exhausted all options.
Melanie Onn was lovely, she was very understanding and I felt that she really listened to me. I explained to her about some of my concerns, e.g. being alone during the day having multiple seizures and other aspects of my illnesses and symptoms e.g. POTS episodes, dislocations/subluxations, falls, incontinence etc. I also spoke to her about the lack of communication between my care in London and my GP/local care. I expressed that I wanted to live on my own with a care package of support. Melanie was really onboard with how I should be able to live a "normal" 26 year old life and that I should be allowed to use care funding for fun things as well as that actual care side of things and be able to live independently and safely. My nurse and I also shared how difficult I find it to manage my health and then on top of that I have all the appointments and emailing and telephoning act.
We also spoke about the extra costs: home care, taxi's, extra money for food and heating (the heating element I don't get an extra allowance during the winter like all older people get [whether they need it or not, but hays a frustration or another day]), any aids I need that the NHS don't provide etc. Literally at the end of the 4 weeks I have next to noting lift of my PIP and I pay for as much home care as I can but it's still no way near enough and there's no way I can move into an adapted property of my own and pay privately for the home care I'd need.
Also I explained about Leeds and how the CCG was only holding the funding for months which I'm concerned about. One of the things Melanine is going to contact to CCG try and do is extend that.
My memory is terrible; I can't remember to outcome exactly but I think Melanie is going to investigate into some things like what am I no longer in the catchment area for the Complex Care Team, contact the CCG, my GP practice, mental health team and adult social care.
Hopefully they will send me an email or letter with a summary of what we discussed and something positive will come the meeting.
It was really good to have my nurse there for support with me as she's helped me a lot and attended a lot of meeting with me, or on my behalf and done a lot of advocating and chasing up for me.