DLA help please

aleisha2k5

sorry this is so long, and my 3rd thread in the past week. but i got a refusal letter for DLA so i am now writing a letter explaining a few things in more details, please can you read and tell me what you think?

I am writing this letter of statement to paint a picture as to how I am affected from living a normal active life by my illness. I filled in my first claim form online and did not feel I had enough space to give a detailed version on my illnesses and how they affect me.

I am also writing to highlight the fact that there are several contradictions on my refusal letter to the answer given on my claim form.

Firstly I would like to start off with my mobility. On my letter of refusal there are some contradictions to what I put on my claim form and the decision makers findings.

Decision maker:
Reasons for not receiving an award for DLA Mobility

Physical Difficulties walking
I can walk:
• over 100metres – I stated only 50 meters before having pain and discomfort
• Slowly
• In a reasonable manner

Guidance or supervision
I don’t need help:

• To avoid danger – I stated I need someone with me in case I fall or need them to find me a toilet in unfamiliar places otherwise I will lose control of my bowel leading to in continence.
• Because of fit, dizziness, falls or blackouts – I do suffer from dizziness
• For comfort and reassurance – I don’t go out alone as my confidence have been shattered by my illness and i need constant reassurance and comfort, as I am afraid that I will have an episode of incontinence, fall and am paranoid that people are aware of my illness and think I am a failure. I also need someone with me to deal with question from people I know as I get upset and can not talk.
My account of Physical problems I have outdoors.

I have several physical problems when walking outdoors because of my Crohn’s disease, joint pain, anal fissures, pain/soreness around my anus and numbness of my legs.
I suffer with crohn’s disease that causes me to have repeated out bursts of pain and repeated needs to open my bowel. As I stated in my claim form physical movement in itself causes my illness to become worse, when moving around I get more unexpected uncontrollable pain that 9 times out 10 leads to an urgent need to open my bowel. This causes great distress for me as when out and the pain occurs it is a deep intense gripping pain that debilitates me from doing anything until the pain passes ,this usually last for around 5-7 minutes. During this time I am unable to move by myself and need someone help to get to a toilet. On several occasions I have been out and been unable to move quick enough to get to a toilet or a toilet has been unavailable and has led to episodes of incontinence. I do carry a ‘wash bag’ that contains sanitary towels, wet wipes, change or underwear and change of trousers, I also now have a RADAR key so I am able to access locked toilets whilst out. My toilet needs happen around 10 times every day and on a bad day I can be 15-20 plus times but during my worst day I am unable to leave my home.

One of the side effects I have from my illness Crohns disease which I also stated in my original claim form is that I suffer with inflammation in my joints. This is possibly arthritis however I am currently on the waiting list for a bone density scan as my consultant believes I may have lost some bone density after many courses of steroid treatment which may have led to osteoporosis. This causes issues for me when walking and both sitting and standing. Walking causes my back to become very painful and stiff, I have a constant bruise down the middle of my spin that is not only painful when walking but is very tender to the touch. . I often have to lie down to ease the pain in my back however even with pain relief I always have discomfort. I also suffer with stiffness in my ankles and knees’, walking isn’t always affected by ankle or knee pain as moving actually helps a little but standing or sitting for more than 20mintues does cause pain and discomfort for me and my joints stiffen up and I sometimes need help to get up and sit down. I can walk around 50metres before my back will start hurting and will need to sit down to have a break, I can then after around 10minutes starting walking again however after about 100 meters my back becomes extremely painful and I walk with a slight limp almost like a full term pregnant woman waddle and slower than average speed. 160meters I would have to stop as the pain it so great I cannot keep moving. This happens every day whether I am out or at home, and I am only able to walk that far if abdomen pain,the need to open my bowel does not occur or the simple fact I am so exhausted I just physically cannot walk more than 10-20meters.

I also suffer with an anal fissure that I originally thought was an anal fistula but later found out after talking to my consultant that it is an anal fissure, this is an abuses/spot close the open of my anus that fills up with puss and becomes extremely painful and makes walking difficult as it is extremely sore. I also have an extremely sore anus due to the volume of stools and the number of times I open my bowel on a daily basis, both these issues make walking difficult and painful as the movement of walking and the skin rubbing together aggravates the skin and just makes them even more sore than they were to begin with. The soreness around my anus is an everyday occurrence however the fissure comes and goes, I suffer roughly once a month with the anal fissure and have to have a hot shower to draw out the pus but the pain with this will last from 1-2 weeks at a time. During this time I find it difficult to take around 20steps at a time before being so painful I cannot walk any further.

And finally another side effect I have to deal with is numbness in my legs, when pain arises I frequently get a numbness feeling in my legs and need help to sit down or get to the nearest toilet as I am unable to move by myself. I have on several occasions fallen due this pain and numbness one of which led to an A+E admission for possible broken wrist and ribs. Luckily no bones were broken however I did experience severe bruising and soreness for several days following.
All this being considered I would appreciate your understanding in how much higher rate mobility would be a great help for me, it would enable me to be able to pay towards taxi costs as public transport is not an option. I cannot use public transport as I cannot stand around waiting for busses etc… as my back will become stiff and cause great pain, and short 5minute journeys in a car/taxi becomes around 30-40mintues on a bus with constant stopping and starting. Also during any point within those 30/40minutes if pain occurred and toilet needs were to arise I would not be able to control or wait until I got to a toilet. This will lead to incontinence and mental embarrassment.

aleisha2k5

i think the none replies shows me that if no one can be bothered to read this then the DWP may not either,

Horseunderwater

Sadly a sanitary towel will not help with incontinence. You should be able to get free pads from the district nurses at your GP surgery or even the proper pants to wear - these will make some of your problems easier to manage when out in public.
To get DLA care of Mid rate then you need to show that you are changing your clothes and or bedding and are having to wash yourself lots and how many times this happens. It is not about the illness but about how it affects your life. Get that correct and you will be home free. Mobility and walking 50 meters - can you do this with out stopping due to pain? If not why not. Did you tell them that? They do not need to know the inns/outs of Crohns - just how it Affects your life. So base any appeal on this and you will get it. You need to read the questions correctly.

SandraScarlett

I've been through a similar thing with a friend. She was receiving HRC and LRM, but advised that her mobility had deteriorated, received a visit from an ATOS doctor (I was there), and then had all her DLA withdrawn.

Like you, she had umpteen contradictory statements in her "reasons for refusal" letter, so she phoned, and then wrote, asking for this to be looked at again.

Still no joy, so she has gone to the Appeal stage. Your letter will be easier to read if you have several smallish paragraphs :)and until she had a written acknowledgment that her Appeal letter had been received, she sent the same letter day after day. I know, because I did them for her.

My friend isn't going to give up and neither should you. It beggars belief that she could be granted a renewal at HRC and LRM, and then everything was withdrawn 2 months later. Good Luck.

xx

SuziQ

I had colitis until I lost my colon to cancer, and belong to a support group. I have never yet met anyone who has managed to get DLA for your type of problem. It is very difficult to prove because of the relapsing/remitting nature of inflammatory bowel disease, meaning you may be better one week than another. You need to be able to give the full range of good and bad days with regularity of occurrence to give them a good picture. Dd you get any supportive reports from your specialist, GP or specialist nurse? If not and you are trying again make sure they know that you are given their contact details and update them on your current status.

The reasons you are giving for needing DLA are obviously distressing and very real for you, but they don't fit the criteria. You really may benefit from getting advice from people in one of the support groups or a specialist nurse ( gastroenterology) or from an incontinencemnurse, maybe, in wording your application as I don't think you will be successful as it looks at the moment. Good luck!

ETA Are you attending a real centre of excellence for your disease? I would be fighting or treatment rather than benefits, myself. My colitis was total, but I managed to work full time for over 30 years despite my colitis, arthritis ,erythema nodosum and iritis. I went through various treatments including high dose steroid therapy, until azathioprine helped me to the point where I could work despite my limitations. Even when i had my ileostomy i was able to get to work- in fact that be something you might consider?There are so many new treatments now and you need to make sure the place treating you is up to date and offering you everything available! No one wants to live with the misery you have.

aleisha2k5

Thank you all for your replies, this is just the mobility side of things. I have yet to right up about care.

As for sanitary towels, I cannot use the hospital pads as they are WAYYYY to big for me. they come roughly up to my ribs both back and front. I have a very small frame so my doctor was the one who advised the over the counter ones.

I have a problem with telling my illness not my needs. I do realise that I am struggling with this.

As for still being able to work and fighting for treatment, THAT IT WHAT I AM DOING! ..... I was the one that asked for bone scan, I have had the medication. currently on azz but my doctor know this isnt working for me as I am seeing him every 2-4 weeks at the moment.
I had an MRI scan 2 weeks ago and waiting for the results (8th april) believe me I am fighting this with all my energy.

Working is simple a no no at the moment, You may have been able to but I have run my own company since i was 19 and 6 months ago had no choice but to give it up! my family basically made me as i have the same mind set as you, i struggled through and got on with it best i could. Its been such a mental roller coaster that everyone near me told me to give it up.. so please don't make me out like I'm being a benefit scrounger because its far from this! being 23 I do no want to live life like this. surely i should be going on hols with my friends, going out at the weekends? shopping for clothes and shoes etc..? this is far from a normal life and for the 4 years I have had crohns i have not once! been in remission.