Sticky Blood-Hughes Syndrome Support
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Help with DLA etc after stroke

Three weeks ago I went to bed with what I thought was a migraine and woke up more or less blind. A stroke had caused a left occipital lobe infarct and I have no sight in my right eye and no peripheral vision in my left. it is like looking through a very small keyhole. My job is a freelance investigative journalist and now I cannot drive let alone see I will have no money coming in at all. I have two sons who live with me in full time education aged 21 and 24 who I support and I have no partner - their father left years ago. I was very well treated in hospital and was part of an early discharge team who were fabulous. They visited every day and filled in the various EAS and DLA forms and my specialist and social worker from the stroke unit said in my condition I would have no problem being awarded these benefits. This weekend I received a letter turning down my request for DLA due to the fact I have the ability to wash myself. I have problems with my balance and the stroke has left me with very low BP so I am apt to faint often. I also have thickening in the artery in my left leg so I have claudication and can walk no further than 50 yards without pain. I have no savings and live in privately rented accommodation. I went to get my prescription filled and the cost was well over £80 for the meds they have prescribed for me so I was unable to get blood thinners, statins and everything else. I cannot pay my rent or any other necessity. I am at my wits end, very depressed and frankly am at the stage where I wish the stroke had taken me out.

If being blind and inability to walk doesn't qualify me as disabled then I don't know what does.

If anyone has any helpful tips I would be most grateful. I have never been so low in my life :o(

14 Replies

Oh dear, and I am so sorry things are so bad. You straight away need to call in any favour possible, from friends family, relatives, parents of your children's friends etc. There are people on here who have quite correctly contested the rubbish DLA behaviour and will help you. Also your local money advice centre or CBA, again people on here who have done this will help you. Hang on in there, that is what we are here for. Of course you need your disability living allowance and that is why there is currently such a fight about it in the press. You will certainly need to go through another process. Also please, I know you have no energy but contact your MP immediately, they are duty bound to visit you in your house if you are too ill to visit their local surgery. Ring and leave a message and explain how urgent it is. All those agencies hate a) MP involvement and b) solicitor! Keep in touch, and please if possible in the mean time in what will be an interim period borrow the money for your medication. Mary F x


I am furious on your defo need to appeal flower & get someone who sees you on a regular basis to help you with your forms..........if I was nearer I'd do them for you......think of your worst day & imagine what that would be like 7 days a week as it can & does for your prescription (i'm in scotland & we're free now) but we used to have a thing called a pre-payment & if you have more than 3 items per month for 12 months it worked out a LOT cheaper & you can buy the pre-payment in 3months/6months/12months (12months cost under £100) and they send out a reminder when it's due again then you don't have to worry about how many items you have as it covers ANY amount of prescriptions you have even non-repeat items =) ask at your chemist about it they fill it in over the counter & you keep your card with you at all times so you can use it in ANY chemist =)

Hope things work out for you =)


Hi Jenny

You need to ask for a reconsideration immediately for your DLA. According to the DLA rules if your sight falls into the following category you will get the mobility component automatically:

you are certified as severely sight impaired by a consultant ophthalmologist, and you were aged between 3 and 64 on 11 April 2011; you must also have a best corrected visual acuity of less than 3/60, or you must have a best corrected visual acuity of 3/60 or more but less than 6/60 together with a complete loss of peripheral visual field and a central visual field of no more than ten degrees in total

If your sight is not as bad as the above then you will need the guides which I can send you which will tell you how to fill out the forms and then appeal. Message me with your email address and I'll be happy to help you. I think that either they are not aware you fulfil the criteria or if you don't the forms do not express your condition well enough. Remember with DLA it is the effects of the condition not the condition itself.

I had exactly the same stroke as you which effected me in exactly the same way. My sight has come back to almost normal. You need to remap the brain by doing as many exercises as possible. Google sight mapping tests and do as many as you can. Do not be put off by the results just do them. Do brain tests, anything you can find. Ask your GP to refer you for neuro-physio so that they can get you to start doing things to remap your brain physically. Hydrotherapy with a physio is really good so if you have a pool near you think about going along and just practise standing on one leg to get your balance going again. I know its horrible and makes you feel sick but the more you do it the more the brain learns to do it again. Ask your GP to refer you to Hydrotherapy.

Here is a link to the Benefits Advisors page. You need to call them and find out what you are entitled to. You should be able to get help with your rent by claiming Housing Benefit, Council Tax etc - call them on Wednesday and go to your council offices.

Every local authority has to have a Stroke Co-ordinator which should have been notified about you and should contact you. They can also keep in touch and also get in contact with people to help sort out financial problems. Speaking with your MP is also a very good idea because they also work with local councillors and will know who deals with what and can speed things up.

Do NOT sit and worry about this as hard and as difficult as this all feels (I know Ive been there), because there are lots of people who will help you. You just have to ask for it and keep on until you get it. We are all here to support you too.

Finally contact your local Stroke Assoc and RNIB, they have networks of people who also can help or guide you. Your two sons are not children, they may well be in education but many their age work and go to uni or college, if needs must then they will have to step up, its their turn to look after their mother for a change! This period won't last, things will improve, Im 18 months on and it makes a hugh difference. My Neurologist told me 6 months to a year for the brain to recover, hang in there..x


Thanks all,

Your answers have made me more confident I can deal with this. I am usually a real fighter and have been fighting the stroke and the fact that I am blind and cannot walk too well but this one darned letter just crushed me. I had never thought of the possibility that they would turn me down. I'm not sure what my actual corrected vision is but I have no peripheral vision on the right in both eyes and the right eye on the left side is very blurry. So in effect I have half an eye. I am 55. The stroke coordinator filled in the forms for me (with me there) and I am seeing an optomotist every two weeks and have been referred for a clinical trial at Liverpool Uni for prism glasses - anyone had experience of those?

My stroke co-ordinator called the ESA folk to try and claim on the phone without going through the 52 page form and they told me that I could still do my job as an investigative journalist on a national newspaper but would have to get the bus. I commute 200 miles a day for a start. By way of an example my editor called me last week (I am freelance so haven't told him what has been going on) and asked me if I could pick up a lorry suspected of bringing in a large quantity of illegal drugs and follow it from Poole to Carlisle. How do they expect me to do that - by running behind? Sheesh. The only story I'll be writing is how this benefits system lets people down. It's not as if I am complaining of a bad back and then being caught out playing football on a Sunday. My consultant, GP and stroke co-ordinator are all so supportive I cannot believe these benefits people are so harsh.

I am interested in the Google tests - where do I find those. Do I just type in Google sight mapping tests?

Than you all for being so helpful and supportive. I was feeling a bit like the Lone Ranger it being a bank holiday but I now will go in with all gun blazing!

Jenny xxx


Hi Jenny, glad you are feeling a bit more fired up. Please keep us posted! we shall all wish to know your progress and we are glad to be of help. Mary F x


Jenny I will have a look for the links for you. I am out at the moment but will look later when Im back and post them on here for you if I can still find them.

Glad you are feeling a bit more fired up as Mary says. I do think you need to tell your Boss though, they may be able to give you something that you can work on that does not require things that are difficult for you - reasonable adjustments and all that!! On the other hand we could do with somebody doing an expose of ATOS and the way they work or even a personal story will always get a much better exposure from somebody with contacts!!! So you go girl we NEED somebody like you to tell the story!!

Be back later.....


Hi Jenny

I am absolutely staggered by your post. I really despair for humanity when vulnerable people are treated like this and am beginning to think we have come nowhere since the Victorian times with the gap between the rich and the poor and vulnerable getting ever wider.

I really feel for you and the only advice I can offer is that a friend of mine with ME found an online site very helpful with filling in her application forms and attributes it to the site that she got her benefit.

I'm not sure whether the site below is the one she used and I will ask her next time I speak to her to see if she can remember, but I have had a quick look and it sounds as though it could be. I think it is independent and not popular with the DWP for that reason! You may have to pay a fee and I'm not sure how much that is.

You will obviously need someone to read it all for you, so I'm not sure if you have someone who would help you with this. The URL is below:

Good luck Jenny and let us know how you get on. Sorry I could not be of more help.

Karen x


Hi Jenny rember that yo I had similar stroke to yours 14 years ago resulted in no peripheral sight to the right out of both eyes and limited peripheral sight to the left out of both eyes. I got DLA but had already had 2 strokes effecting left side of body and memory.

Intereseted in the glasses I was told glasses could not help as eyes are perfect its the part of the brain that reads the signal from the eyes that is damaged if you could get glasses I could drive again (the one thing that I really miss from pre aps.

Can you get HC2 certificate that enables you to get free perscriptions (I have only just got it - its means tested)

sharon xx


I suggest in the short term you appeal this decision.

Also, in the mean time, apply for help with health care costs using claim form you can get at the hospital pharmacy. If you are on any treatment for seizures you can get free prescriptions with the certificate that they will send you if you are successful. Also you will get a certificate for free prescriptions if you have no income and limited savings.

If they turn you down you can pay for a prepayment certificate which will save you money.

Go to the local council and ask to see a benefits advisor, to help you fill in forms for housing benefit and council tax benefit. If you have no savings you should get at least a proportion of your rent and council tax covered.

One of your support team should help you write a letter to your landlord explaining the position you are in and that you are waiting on decisions about your award. Your landlord would have to take you to Court before he could attempt evict you and the court would rule in your favour. But its important to keep him informed.


Hi Jenny

Found a couple of the links to sight tests I used:

And here is a link to some brain training. You don't have to buy anything some of this you can get for free:

BTW - the DLA guides I was offering you about appealing are from the Benefits and Work website. The info is excellent and there is a high success rate but you may need somebody to help you once you have the information.

Let me know how you are doing and how you get on with the above.



This is outrageous! I am incandescant on your behalf.

CAB is definately the way to go they will help you appeal. I think they do home visits for extreme cases.

When you feel better and get the help you deserve I hope that you will use your skills to write your story. Can any of the organisations you have done work for help?

Thinking of you.



Thanks All,

I really do appreciate all your comments and help. I called my advisor from the stroke unit today who deals with all the benefits and to say she was incandescent with rage was definitely putting it mildly. She is appealing on my behalf and has a lawyer in too. I had to go and see my GP today as I had a migraine yesterday. Now my migraine symptoms are exactly the same as the symptoms I had when I had the stroke but my BP was low (instead of sky high) so I decided not to go hoofing into A&E on a bank holiday but I showed him the letter from the DWP and he is now going to call and write them and demand them to retract their decision. God only knows if they will but my name will be fairly well known down at the DWP by the time this is over - whatever the decision. Lol. I have spoken to one of my editors on the Independent and he has given me the go ahead to research this ridiculous situation when it is all over. Not just my own case but everyone who deserves to be awarded these benefits and seem to have to fight the system all the way when people are feeling ill and at their lowest. And then there are folk getting the benefits for a bunion or some such.

Thanks too to Hughes Patient - I have been doing those sight tests all day and very useful they are to. Your post gave me some hope that there is a small chance I may regain my sight a little. To Herb - I will let you know how the prism glasses work - it would be so nice if they did eh? Not being able to drive is the one thing that is getting me down the most.

Thanks again for all your kindness. I will keep in touch.

Jenny xxx


Hi Jenny. I am so sorry you are having such a difficult time. I can see you have had a lot of good advice and support from here. I am also appalled at the cost of prescription medication for life saving drugs. It is vital you take this medication. Have you managed to get your meds now?

Jane xx


You will also be exempt from prescription charges if you are chronically sick and disabled and cannot go out on your own


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