I am very confused and looking for a bit of clarity.
I keep getting conflicting information including when doing research.
People keep telling me that I am entitled to certain discounts etc and should take advantage of these now to save money in case my condition gets worse and I have to come out of work.
Fortunately I don’t feel that I have some of the severities that others do and don’t feel/think I qualify for any kind of help.
And also I am not “registered disabled” which seems to be the criteria for most discounted services/additional help.
Any ideas? Or clarification would be greatly appreciated
You have a condition that gives you some rights not to be discriminated against. The “benefits” you may receive are dependent on how your MS impacts you.
The system is fairly convoluted and there is nothing you are”entitled” to just because you have MS.
Even something as simple as a blue badge actually depends on your circumstances. Anecdotally I have heard that you application may be easier if you have a diagnosis from a few years ago.
There are schemes to help you to keep working.
I think you would have more success here if your query was more specific. Citizen Advice may be able to help better.
Thank you so much for your response. Pretty much as I had thought then. As I currently don’t claim for any type of discount as at the moment I’m able to cope but then as I said people have been sending me loads of things saying you need to look into this and that and then as you said it’s all very convoluted!
One peculiarity that is not obvious that does have long term impact is if you receive PIP before you reach retirement age it continues after. See Personal Independence Payment (PIP) | MS Society
As Attendance allowance (the similar benefit for those post retirement age) does not include mobility this leads to interesting conversations when people are discussing their choice of new motability cars!
You might be eligible for the lower rate of PIP, it is not means tested. It is entirely dependent upon how you yourself are affected by your symptoms. Big form(s) to fill out, your GP/Neuro may need to be contacted to confirm you have the symptoms/condition stated, possible interview/assessment. They might say no - but then again, they might say yes - I never thought I would qualify, but I do.
I started getting pip several years ago, before I was diagnosed with MS because my symptoms were causing difficulties and because of the amount of medication/therapy I was on to help with said symptoms.
People always think they are being helpful by telling you how you should be able to get this, that and the other - I still have people telling me I should get a Blue Badge - Nope, can walk further than the length of a double decker bus with my walking stick so no, I don’t qualify for a Blue Badge.
This is super helpful thank you!.
If you don’t mind me asking do you remember the criteria for the blue badge?
As most day I can walk just fine but for example I had 3 months of non stop vertigo so I could walk as in use my legs but I couldn’t walk anywhere without someone walking with me because it was like I had been boozing non stop so even nipping into a shop for bread & milk I had to have someone with me in case I toppled over and I didn’t want to spend months being cooped up at home because of it
you receive a Personal Independence Payment (PIP) because you can’t walk more than 50 metres (a score of 8 points or more under the ‘moving around’ activity of the mobility component)
you are registered blind (severely sight impaired)
you receive a War Pensioners’ Mobility Supplement
you have received a lump sum benefit within tariff levels 1 to 8 of the Armed Forces and Reserve Forces (Compensation) Scheme and have been certified as having a permanent and substantial disability that causes inability to walk or very considerable difficulty in walking
you receive the mobility component of PIP and have obtained 10 points specifically for descriptor E under the ‘planning and following journeys’ activity, on the grounds that you are unable to undertake any journey because it would cause you overwhelming psychological distress
If you have any score other than 10 points under descriptor E, in the ‘planning and following journeys’ activity of PIP you may still be eligible for a Blue Badge, but you do not automatically qualify. This includes if you have a higher score of 12. You will have to provide evidence to demonstrate your eligibility which will be assessed as part of your application.
PEOPLE WHO MAY GET A BLUE BADGE
You may be eligible for a badge if one or more of the following applies:
you cannot walk at all
you cannot walk without help from someone else or using mobility aids
you find walking very difficult due to pain, breathlessness or the time it takes
walking is dangerous to your health and safety
you have a terminal illness, which means you cannot walk or find walking very difficult and have a DS1500 form
you have a severe disability in both arms and drive regularly, but cannot operate pay-and-display parking machines
you have a child under the age of 3 with a medical condition that means the child always needs to be accompanied by bulky medical equipment
you have a child under the age of 3 with a medical condition that means the child must always be kept near a vehicle in case they need emergency medical treatment
you are constantly a significant risk to yourself or others near vehicles, in traffic or car parks
you struggle severely to plan or follow a journey
you find it difficult or impossible to control your actions and lack awareness of the impact you could have on others
you regularly have intense and overwhelming responses to situations causing temporary loss of behavioural control
you frequently become extremely anxious or fearful of public/open spaces
As far as I am aware there is no register, I thought notion was long gone. If anyone does say that, ask them where you sign up! You can get disability related items.V.A.T free, eg. recliner chair, bought at high street shop, just ask and let them look into the V.A.T rules!..does help having S.I.L who was a tax inspector, she says always ask. I think we saved a fair bit on the bathroom too.
Post code lottery. As I use a rollator I had been unable to get back into the car when it was in a normal space. Also I had my diagnosis letter from several years earlier.