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hope1965
30th December 2014, 16:43
Hi all its been a while since I last posted. I cant find out what I wrote in previous posts but a quick update...My mum has had all the tests for MND but the neurololgist said that whilst there were aspects of MND there were also aspects of CBD and Parkinsons. He has decided on the sticking with the current diagnosis of CBD but has enlisted a MND specialist nurse from our local hospital.

My Mum had an awful fall 2 weeks ago. She was unable to put her hands out to break the fall (right arm totally paralysed and left arm very shaky) and has had lots of internal and external stitches in her face which is black and blue. I have been trying to contact the neuro rehab team to see when she is going to get seen by an OT so that she can get some sort of walking aid/wheelchair. She doesn't want to leave the house at all now and I fear that this fall will accelerate her condition. Its been incredibly frustrating that despite 2 referral requests by the neurologist to the neuro rehab team this year she still hasn't been seen. I finally got through to someone yesterday but they said there was a long waiting list. I asked if she could be moved up the list as I think this is now urgent,she is also frail on her legs, they said would phone back but still not heard from them.

I then tried the MND nurse and left a message but again she has not returned my call. I also called the 'falls clinic' at the hospital because her GP has made an urgent referral after her fall but they said that they couldn't get involved as she is on the neuro rehab list.

In desperation to try to get some help I phoned adult social services and after being transferred to various departments finally got through to a social worker who sounded like he couldn't care less. He has said he will issue my Dad with a carers card in the event that if anything happened to him my Mum we would get 48 hours care, which she needs round the clock. My father is 81years old and frail himself. The social worker also said he would get a list of care agencies out to me but that is it!

Does anyone else have similar experiences? I know that the NHS is pushed but she hasn't seen anyone all year and was diagnosed in January 2012. I cant help but think if she had been given a walking aid this fall may not have happened.
Not sure about adult social services either...surely they should do a more formal assessment of her needs?
I would greatly appreciate any advice that you might have on this....I am so worried about my Mum.
Thanks
Hope

pete
30th December 2014, 17:50
Hello Hope,

Have you spoken to MNDA connect yet, I ask as they seem to have a way of getting things moving, well worth a call, NHS services vary over the country, but if your mum needs help keep on at them, they can find funds to treat others when it suits them ,so don't be put off, they have a duty to provide those who need help, just a matter of shouting just a bit louder , I really hope you get the service mum needs it's available just a question of when.
As far as social workers go, I havnt seen one in seven years, but we have had phone calls, that proved useless. They live in another world , so use your MND nurse they also seem to care more than most.
Pete

Terry
30th December 2014, 17:52
Hi Hope;

Walking aids might be hard for her to use if she has little arm control. You can get gutter or trough handles so that you can just rest arms in them.

OT's etc is very much a post code lottery but it's also worth referring her to the hospice as these places are generally more helpful and have there own OT's etc.

Also you could rind Mnd connect and see if they will help you. They should help her as another fall might well result in her being hospitalized and will cost the NHS so much more.

Regards Terry

Springtime
30th December 2014, 18:25
Hello Hope,
How upsetting and absolutely so frustrating for you. I am sorry you find yourself in this circle. Its a mess and thats for sure, you seem a very sensible person who has tried every avenue and had the door slammed in you face. I am at a loss to know where I would go from here if I was you. I would certainly ring MND connect as Pete and Terry suggest. The only other thing I can suggest is that you ring your GP again and ask where they can point you to next. What about a word with your MP, not sure if they could help but worth a try I should think. I am sorry I can't be more helpful but I wish you luck. Hugs Springtime x

hope1965
30th December 2014, 19:26
Thanks guys I did ring MNDconnect and had a long chat with them which has proved helpful. I think I am also going to start logging all the safeguarding actions that I have made...all the chasing up phone calls to the neuro rehab team, falling clinic, MND specialist nursse, GP, Social Services etc. I am finding it so frustrating that it takes so long for any action to be taken.

I'm thinking of contacting my MP as I think that for a whole year to have gone by with no professional support intervention due to various excuses like 'long waiting lists' and 'we don't tread on the toes of the neuro team' are totally unacceptable..will let you know how I get on and thank you once again. I have had more feedback on this site than with the NHS and Social Services all year!

Jan
30th December 2014, 20:50
I genuinely believe this is an age related problem, seems the older you are the less help and more excuses are offered, it should not be this way at all. Look at what poor Jean went through (Alison's friend). She should not have gone through what she had to endure. Get on the rooftops Hope1965 and embarrass them into helping if you have to, this is so beyond unacceptable in every way it's bordering on criminal

Ciaramcmc
30th December 2014, 21:07
I agree with Jan. He who shouts loudest and all that.... Your Mum deserves better and you are trying so hard for her. Before Joe was diagnosed he kept calling his GP to say he wasn't safe at home during the day as he was alone. It was a young, newly qualified doc who pushed things for us. This was before diagnosis and since them we are inundated with OT, district nurse, social worker and hospice nurses. I have contacted local MLAs as the grant for downstairs living is such a slow process. I'm a very private person but for this I'm prepared to ask anyone for help. I'm sure you just feel exhausted and fighting with people is the last thing you want to be doing. I truly hope someone listens to you soon and you, your mum and dad get the help you need. All in my thoughts and prayers.

CiaraX

hope1965
30th December 2014, 21:13
i totally agree Jan...I am trying to get support and safeguard my mother and father but it seems to be an enormous mountain to climb...I am a professional myself (teacher) and safeguarding of children is paramount. If I raise a safeguarding issue with a child in my care it is instant intervention. With my elderly parents it seems to be something that is not urgent so all year me and my sister have been struggling to cope and no one seems bothered? I am escalating my voice to the point that I am a real pest now because I cant think how else to get help but its awful that you have to do this to get heard?

Jan
30th December 2014, 21:47
I guess I have been 'lucky' in that I am relatively young to have this disease (I was 55 just 2 days ago) and have had some great support from my professional team. Through joining this forum it has become all too obvious to me at least that age is a factor in how care is delivered. Totally different scenario but my father in law was an extremely fit 81 year old, he now has a Neuro problem (not MND) and needs an op for a shunt in his brain, they sure aren't hurrying themselves over it which makes me so mad! It's as if oh well, he's had a good innings, it should not be this way but it is!

Blimey, just looked at how much typing I have done today! Maybe screaming and sticking up for the elderly will help keep me motivated and my hands moving (although it is just with one finger now)

mik
31st December 2014, 00:08
hi,
i was wondering if you had a local hospice. if so it might be worth contacting them and trying to get a visit from a hospice nurse. in my experience they are wonderful people who can help a lot.
just a thought,
mik

Alig2014
31st December 2014, 09:55
Hi have you tried the CBD website, it does have links to getting help etc.

Www.pspassociation.org.uk

I think it's outrageous that until a firm diagnosis of anything help is so hard to come by. If people are having difficulties with mobility etc help should be there. Hope you get something sorted x

Alison x

Ciaramcmc
31st December 2014, 19:57
Hospice a huge help to us already. Worth a try.

CiaraX

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