March 28, 2023 at 6:54 pm #202815New…mum with SMA
Hello, I’m new here. My name is Donna I am a mum of 3 and I have Spinal Muscular Atrophy.
I’ve recently been told about getting some sort of advocate for myself. I’ve never heard of this before but I was told to find ground ect and ask about to see what there is.
DonnaMarch 28, 2023 at 7:07 pm #202816Reply To: New…mum with SMA
Hi there, Donna, what do you mean by “ground”? Are you referring to ground floor housing? Do you know who is your local Occupational Therapist?
Have you had any contact with a Genetics Nurse? I have had alot of help with regards to my PIP application. The nurse in question actually filled in the form for me, after first visiting to take notesMarch 28, 2023 at 7:12 pm #202817Reply To: New…mum with SMA
Hello, sorry It was suppose to say about finding groups ect to ask for advice and where to find any support, advocate ect. Was meant to be groups not ground lol.
No I don’t no about the OT I’ve never had one either and I’ve never heard of a genetics nurse.
DonnaMarch 28, 2023 at 8:34 pm #202818Reply To: New…mum with SMA
I’m afraid I am no use for advice about social groups, I am virtually a hermit these days; the pain clinic want me to join some sort of group, as apparently, pain is worse if you live in isolation. (So said the consultant).
Hopefully someone more sociable can offer some advice! ( I must however warn you, there are few commentators on here these days, so be patient).
All the best
RanaldMarch 29, 2023 at 12:48 pm #202819Reply To: New…mum with SMA
I agree that getting the OTs involved is an excellent idea. Maybe through the Social Services or through your GP. Your Social Worker should also be there for you to stand up in your support when its needed. Also the MDUK have some excellent advocates and have been immensely helpful for me in the past.
You might want to seek our not just the MDUK but
Spinal Muscular Atrophy UK – SMA Charity
Spinal Muscular Atrophy UK
I am more concerned about the lack of support you are getting. You do not seem to have a social worker in place or an OT helping you. Are you able to tell us a little more about the situation so we could perhaps offer some more targeted support.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015March 29, 2023 at 1:23 pm #202820Reply To: New…mum with SMA
I was born with sma I’m now in my 30s, I’ve never had a social worker or anything.
I only got told about some of this from a social worker that was having a meeting with me about my kids and she asked me about support ect and I explained I’ve never had any. I do see a neurologist once a year but that’s itMarch 29, 2023 at 4:15 pm #202821Reply To: New…mum with SMA
I recently got a wet room and bidet toilet installed by my local council. All it took was a phone call to my local OT department at the local council, who sent out an OT to conduct an assessment of my needs and a year later, the installation took place. (The waiting list was quite long).
Whenever I get a DWP letter about PIP, I call the Genetics Nurse at my local hospital and she helps me with the forms at my home; taking notes then taking away my forms to fill in when she gets home. I am so grateful for her taking on this extra, unpaid work. Thankfully I have been given a 10 year award this time, so won’t need to trouble her for a while!
It doesn’t come easy to me, asking for help but I find you have to keep pestering various agencies in order to be taken seriously. Be a pest!March 30, 2023 at 12:38 pm #202822Reply To: New…mum with SMA
Donna it does seem as though you have very little support and need to get some. I know from my own experience that my MD affects all my kids but in different ways let alone the difficulties of living life that you will obviously face. As Ranald has said his OT helped with a wet room, even though it took a while, mine has helped with a riser recliner and rails outside.There are many things they can do for you, although their budget is limited. I hope you are claiming PIP, if not you will need a trained eye to fill out the form with you and help you through the process. You will have no doubt discovered that most people’s knowledge of MD sits in the zero to very little category. seeing a neurologist is good, and indeed they can help you too even if you do not have an appointment. They will know where you can get support locally, and indeed nationally, although I would suggest that MDUK is a really good place to start. And yes, Ranald is also right. You may have to be a pest with GPs, consultants, OT and all the other agencies, but it is the only way to get things done. Keep your rights always in mind.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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