I have just found out from my social worker today that a care plan has been approved for me to provide me with a carer to support me with personal and social tasks.
Social services have approved the following support for me:
1 hour 3 times a week for a carer to come and give me a bath and get me into bed.
2 hours twice a week for a carer to take me to do my shopping or go to appointments.
4 hours once a month for social stuff eg going for a night out, going for a girly shopping spree with my mum or friends etc.
1 hour once a week for a carer to clean my flat and do my ironing.
There is also a contingency fund so that if my condition deteriates at times and i am stuck in bed they will send a carer to get me out of bed, dressed (if possible) and give me a meal and then come back in the evening to get me back into bed.
I am so happy i can't believe how much support they have said i will get. At first it was only going to be 2 hours twice a week to go shopping and give me a bath. I really hope that getting all of this support will make a big difference. I especially feel hopeful that it will get me back out there and getting a social life back. Iv lost alot of friends over the past year due to my condition deteriating and that is the one thing that i have found hardest of all. I have one friend who visits me regulaly and takes me out in my wheelchair but as he has a milder form of the same condition, he is finding it harder to push me. I also hate my friends having to push my wheelchair or having to rely on friends to go to the bar to get drinks, or help me find a disabled loo, carry my shopping etc. To be honest, I hardly see anyone now so I don't even have the chance to ask them to do these things for me.
It will be great if I can get out more and start spending time with friends again knowing that I won't have to ask them to do anything for me other than just enjoy our time together.
My social worker has spoken to the care agency and they have carer in mind who they said should really suit me. I don't know anything about her yet other than she is young which is what I wanted. That way when we go shopping or out on a night out it will just look like I am with a friend rather than a carer or an older relative.
I feel like this is a massive breakthrough in my region as I don't think there is anyone else with hms/eds who gets care support , or at least to this level. I'm hoping that with them approving this amount of support for me it will make it easier for others with hms/eds to get better support in the future.
People with hms/eds find it extremey difficult to get this type of support due to the lack of understanding of the severity of the condition. It makes it even harder to get support becuase the condition can fluctuate so much within such a small amount of time. This often means that when people with the condition do ask for help, it is refused becuase it is assumed that they can function much better than they can. It is also hard for service providers to provide care on the basis that the support is helpful becuase it PREVENTS deteriation and injury rather than it being as a result of deteriation or injury.
Of the few hundred people I know with hms/eds from the www.hypermobility.org.uk forum and facebook, only a very small handful recieve any support with care. Those who do either have another condition that has justified they need for support or they are at the extreme end of the spectrum being completely dependant on others for even very basic tasks. They often also have children with the condition so the support they recieve is often more support for them to be able to care for their family.
I know of a few people in my town alone, and more in the surrounding area who would benefit from some kind of support from social services, either in terms of care support, or simply with loan of equipment such as bath seats, electronice raising beds etc. I feel positive that with the local social services accepting and approving this level of support for me, that it will mean that others in the area will find it much easier to get the support they need too.
Big step forward for recognition of hms/eds in the care system today!!