Hi all. Hoping someone on here can give me some ideas or tips or what to do next please as the m.s support where we live in the UK is almost non existent, and we have been kind of left to deal with it. Hubby was dx in Dec 2011 had to leave his full time job as signed off by doctor in Feb 13 as he was getting worse. He is on rebi f and injects 3 times a week. However me and hubby feel he is getting worse, his mobility was one of the first things to be affected but since Monday this week,his right leg has got totally worse,than what it had been previously. It’s hard to see him struggle, he does use his stick but it is now getting to the point were that is not really helping anymore. I feel he has spms rather than rrms as he seems to tie in more with the spms side more than the rrms,however when ever I have broached this with the Neuro or ms nurse they just don’t seem to listen, I am with him every single day and I can see my husband declining but the health care professionals just don’t seem to take note, we see the Neuro once every 12months and the ms nurse is about the same. Physio hasn’t helped the hubby with his mobility. Also during the time of dx and hubby being signed off from work indefinitely and waiting for our benefits to get put into place (we was living on £60 approx a week, we also have 3 children) we fell into rent arrears with our housing association, while we had to wait for benefits and housing benefit to get sorted, we then nearly got evicted and now had the court costs put on to the arrears, however our house is not suited for hubbys medical needs, we have this in writing off our housing officer, an occupational therapist that works within our housing association, and the hubby’s ms nurse to, but due to rent arrears they won’t help us get in to more suitable accommodation for hubbys medical needs, the housing association we want to go on (different to one we are with) as we want to move to the next town where hubbus gp/chemist children’s school and immediate family live but they won’t allow us on their housing list due to the rent arrears, I feel at a lost as it seems even though it wasn’t our fault we fell into arrears and our housing officer was fully aware with what was happening, it seems nobody wants to help us. The house is no more suitable for hubby, he can’t climb the stairs to our bedroom we don’t have the room on the stairs for a chair lift, we don’t have a room downstairs we could convert to a bedroom, everything is impractical in our house for hubby and it’s a continuous struggle for him, which then breaks my heart. If anybody has any advice what so ever that would be great. Sorry it’s all jumbled and probably hard to understand but I am new to all this and was writing this as it came out. Thank you in advance
Hi Adelle,
Regarding, any arreas on your rent you must take legal advice from the Citizen Advice centre or a Law centre, because it is not your fault that your husband is ill with this dreadful decease.
Regarding, moving you and your husband and family would be made a priority in moving because your husband as a chronic neurological condition, so please contact your local council for so that you can start the procedures in to moving into a fully adapted property, that will suit your husband clinical needs.
Regarding Housing benefit, all your arreas should be back dated to when you first submitted you Housing benefit forms and Council tax benefit forms.
Perhaps, you could ask your council for a care manager or a social worker so that you and your family can have necessary support link, that you all require.
Perhaps, you could phone MS Society head office, for help and advice, because they do have there own legal team.
Councils do have the responsibilty to meet your husbands clinical needs.
If you have any more problems, please contact your local MP.for help and advice.
I hope that things work out for you and your husband and your family, and that you are relocated into the correct property.soon
Take care,
Kev
If your husband is getting worse telephone MS Nurses and/or neurologist’s secretary. If no joy ask GP to contact neurologist. If still no joy go to A&E.
The stress you are both under will be affecting your husband’s MS.
Telephone 0808 800 8000 to talk things through with someone on the MS helpline.
Liz