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What care/treatment should be in place? My mum has none!

Hi there

My mum (66) has had MS for about 25 years. For many years she has managed very well in an ostrich like sort of way (ie head in sand, ignoring it the best she could). However, her symptoms eventually resulted in early retirement from work and three years ago a very quick downward shift in her health resulted in very limited mobility, double incontinence and dependence on carers 4xdaily to do all personal care, hoist to/from bed to chair to wheelchair, etc. So, life feels very limited to her.

The principle concern for me, however, is the fact she seems to receive no treatment or therapy beyond the annual visit to MS clinic. Very recently her fine motor movements have diminished but nobody medical seems to be keeping anything like a watching eye on her to pick such changes up, and she is very much ‘not one to complain’ so hasn’t called people in herself.

My sister and I are on the verge of writing to the GP to ask how their care plan for my mum works. We are really disheartened and distresssed that not only is there never any discussion with her about attempting any drug therapy (at all, as far as we’re aware), there is also nothing being put in place to try and preserve the limited movements she does still have. I am convinved that physio would help with her prolonging the use of her hands/fingers.

If anybody has info about a ‘typical’ care package/treatment regime/therapy, I’d really welcome hearing about it. I know every person is different and will vary in their specific needs, but I want to know if we’re right to question why she doesn’t seem to be receiving anything.

Thank you all very, very much.

Hi I’m so sorry your mum’s not getting the help she requires, have you thought of going to her GP’s with her & asking for a referall to Occupational Therapy? They offer lots of advise, aids, home visits of physio etc etc. Wish my kids were as concerned as you are xx

Hi, thankyou for being such caring daughters.

Has your mum got an MS nurse? If so, perhaps you could contact her and ask the questions.

I have had my problems a long time, but not as long as your mum has.

But I think my care package, which was agreed by me, is meant to cover my personal care and outings only. After that if physio, OT input, continence guidance etc is needed, it has to be arranged separately.

If the MS nurse cant help or isnt available, then the GP is the one to see for referrals.

Hope this helps.

luv Pollx

Me again. Just had another thought.

In our area, we have something Gateway to Care. We can ring this ourselves and tell them what our needs are.

Do you have such a dept? They are the first stop for Social Services and are very helpful.

pollxx

Hi there,

Just wanted to make a comment on drug therapy.
It sounds very much as though your mum is now secondary progressive (like me) and there isn’t anything like DMDs for SP (at the moment) but physio sounds a good idea.

I think that the NHS works on the squeaky wheel principle ( it’s the squeaky wheel that gets oiled) If you say nothing you get nothing. It’s a really good plan to contact GP/MS Nurse to find out what is available for your mum and to ask that she gets it.

Jane