Hello everyone, I am writing this on behalf of my stepdad who has recently been diagnoised with MS, me and my mum look after him but we feel neglected alot by NHS as everything is so slow, his still not on any treatment, and everyday his getting worse for example, he fell over the other day and hit his head hard, his unsteady and we have stairs in our home… we have bought some things like handles for shower, cructhes but his really struggleing and most days he feels so weak and also his memory has been effected so he repeats himself alot now, its upsetting to watch all this but we havnt had no advice on disability equipment… or who to call.
My mum has filled in the big form to tell the social my stepdad is now disabled but that can take weeks im guessing? we have not heard back yet so he is not classed as disabled yet.
I need a diasbled car badge for my car because i drive him around but do we have to wait until his classed as disabled before i apply for this badge? or can i apply now?
also we need things like stair lifts, wheelchair, more things around the home to support him but do we have to pay for this or is there someone we can contact who comes and looks at our home to see if they can put these things in? or does he have to be classed as disabled?
Everyday is getting worse and we have nothing to support him, we feel ao alone and confused right now with it all, Can anyone give advice please? While we are waiting for treatment we need to support him by applying for these things in the meantime.
lts a bit of a postcode lottery regarding what the social services will provide. But first of all get his GP to refer him ‘urgently’ to a OT Occupational Therapist. As for a Blue Badge - the fact that he has a diagnosis of MS and his current mobility problems are enough to qualify for a Blue Badge. l think you can apply online - it will be your district council who provide one. l have neighbours with blue badges - and apart from the fact they are elderly they actually walk far better then my OH who takes them to do their weekly shop.
Your step-dad will need a photo - the type you get in the booths for passport pics. When you complete the form - you must answer as if it is his ‘worst’ day.
l found trying to walk with crutches and sticks to difficult - so l use a ‘rollator’. lt has 4 wheels and a bag to carry lots of things a seat that l can put a tray on to carry my plate/mug etc - and if l want to sit down l can as it has a back support. lt folds up easily to put in the car. Also it stays in place when you let go of it - not like sticks that clatter to the floor.
Make use of shopmobility centres when you go out shopping. He might find the scooters give him a sense of independence - and in the future he could get one to use at home.
There are benefits he could apply for and the best people to ask are a website called benefitsandwork - or directgov - or .turn2us.org.uk. Also find out if he has critical illness insurance - he might of taken it out with a mortgage.
Something you can do right now is make sure he takes Vitamin d3 and Vit b12 - just google these important vits. ie Vitamin d3 deficiency ms - and vitamin b12 deficiency ms.
Most of us get our vitd3 via amazon - l take 10.000ius daily. Both vits help with depression/fatigue/memory. B12 is the one for memory and brain function. Google ‘could it be B12’ and eperdemic of misdiagnosis.
Lets hope his lifestyle improves with some easy adaptions/changes.
Hi, Frances has given you a really good, full reply, with all the things I would say.
Getting an assessment from an OT is paramount. Yes, there is always a waiting list, but try something I have done in the past when trying to help my mother in law.
This seems to be a big secret, but I tell loads of people about it`s existance.
Our GP surgery has a person called Community Matron.
Our`s was like lightning. Once she knew the situation, she flew into action and got things sorted. Then she came back and checked on me and got some equipment for me. She went and fetched it herself!
So ring your GP and ask to speak to Community Matron. I believe every surgery has one, but it`s like trying to find the Wizard of Oz!
You need an assessment by an occupational therapist. They will recommend what aids/adaptations are required and advise you what can be provided and what you need to buy for yourself. You can refer yourself (or get your GP to do it) to adult social care at your local council.
Wheelchairs come via the national health. You need your GP to refer you to wheelchair services.
Blue Badges are provided by the local council and you apply through them. (Perhaps on line)
You don’t need to be designated as disabled for any of these. It is about need not labels. Indeed there is no formal registration of disabled people although lots of people think there is. You don’t mention your dad’s age. If he is under 65 he could apply for PIP (Personal Independence Payment) if over 65 it is Attendance Allowance. Both these benefits are via the Department of Work and Pensions.
None of these services move quickly and you will face a wait I’m afraid. It is very common to feel abandoned when newly diagnosed but I would try to get the GP on side – he may be able to expedite things for you. Have you been allocated an MS nurse They also may be able to help.
I self referred to my local adult care department in social services and very quickly received visits from an O/T, community nurse, physio and speech therapist. After assessment various adaptations were made to the house, again, very quickly. I think it all happened within 2 weeks. The O/T also arranged delivery of rollator, trolley and various bits of equipment. I also self referred to my local CAB office where I was given benefits advice, had the forms completed for me and was awarded DLA fairly quickly thereafter. Hope this helps. Catherine
Oh wow thank you everyone, brilliant advice! I feel better already, Cant wait to get home from work and show my mum and stepdad everything you have all written, Mick my stepdad also struggled with cructhes and had a bad fall the other day, they just dont support him enough, so thats a good idea with something he cant also sit on and the vitamins too. This is more advice than i expected so Thank you xx
My stepdad is 47 so yeah we are waiting for an appointment with our GP so thats great, I will take all this info and go in with him, also yes we have only recently been given an MS nurse who gave us her mobile number so I will also text her when i get home, The problem we had was when he was diagnoised they sent him away with no treatment and just said you will get a refferal letter, well a month past and we had no letter, no nurse contacted us… and we were kinda trying to adjust to him having MS, so we feel we wish we chased it up but my mum didnt want to rush NHS as they can be slow, but yeah we wasnt even given a nurse, we had to chase that up in the end, they were very sorry and explained it slipped through the system its just such a manic crazy time for us all and we feel abit in a daze so you all have made it clearer for me, it makes sense what your saying. He has an appintment tomorrow to finaly see an ms doctor, wooo! we cannot wait til the treatment starts, just hope it makes him more comfortable than what he is right now x
So pleased you have got lots of really helpful replies. The lovely people on here have a mind full of info that will come in handy for you, your mum and your stepdad.
I can’t add to anything that has been said to you on the above posts. The main thing for me was my GP referring me to an Occupational Therapist at our local council. She arranged a bed guard, hand rails and even a wet room.
i hope you get all the help you deserve. (ad say hi to your mum from me)
just to add to the fab advice you have already received.
ask the gp if your step dad can have B12 injections monthly.
they are brilliant, i wish i could have onr every day!
carole x
[/quote] When l mentioned to my GP about B12 injections - she said ‘Oh, they are only needed if you are on DMD’s’ - So l just medicate myself and take a high dose everyday. l have tried several different types and at the moment are taking NOW lnstant Energy B12. little sachets that you mix into water and drink - it is foul - but worth it. They contain 3 forms of B12 plus Bcomplex Chromium and Creatine. Each sachet contains 2000mcg. Got mine from good old amazon.
Him I’m also working through the list myself so can confirm a few bits…
Applied for the parking badge online, they telephoned me to tell me it was aproved and I sent them payment a week ago = just waiting for it now. They will want a photo of him and that can be done online too so a pic on a phone will work (I used one I look myself of a new haircut and they said it was fine), and they want certified true copy of ID & proof of address.
I just put our names down for a council place as we rent privately and if I can’t work it’ll all fall to my husband (we’re self employed too) - BUT when I last spoke to the council, the lady was really helpful and said I should get my name down on their wating list for an occupational therapist as there’s removeable items that could help me around the house, I know it’s already been mentioned and my point is you can simply ring the council and ask, you don’t need to be referred.
I saw PIP was mentioned (I don’t know if that’s the form you did already), it’s quite a beastly looking document and my MS gave me details of an organisation that could help me complete it.
Oh, I asked my GP if I would get prescriptions for free, I have mobility problems that aren’t going to go away - he gave me a form to complete and he signed that off as agreed I had a permanent disability.
Good luck, there really should be a one off process but it seems everything is in dribs and drabs, here there and everywhere! You’re not alone on that score and this forum has been my first place to look and seek answers/support!
xx