Can any of you very knowledgeable people help me out as it is so hard to get the full info.

I was forced to take early retirement on health grounds back in October, I am nearly 57,I am shocked that there is no advice literature telling you what to claim for or what you may be entitled to, even the CAB have come up with bits of info thinking I already knew, some the time has passed on and it's too late.

I am getting ESA and applied for DLA mobility as I can't afford to run my car anymore and my mobility is getting worse rapidly, so used to just jumping in the car and going where I need to go, nearest bus stops are at least a mile away and I can't afford taxis all the time, my 76 yr old mother has been ferrying me around to appointments etc. but I can tell she is getting fed up of this now as she has a busy social life. My activities with the dogs has been curtailed as it is not a necessity going to ringcraft and shows so I am stuck at home with the local short walks when I feel able,luckily they are a small breed and my garden is big and dog/disability friendly in the back.

I have worked almost continuously for 40yrs bar for 2.5 yrs off in early 80's when I had my son, I was left as as a single parent when he was only 3 months old, I moved nearer my parents before he was a year old so I could get back to work and have been working full time since 1984 and made no claims on the benefit system till now, it makes me very depressed that all those years of work seem to amount to nothing when you become too ill to work, I was advised 8yrs ago to pack it in but stuck it out.

I hope someone can help me, Thanks in advance

PS I need a help getting the garden back on track, would be able to cope after that, any suggestions?

The best person to ask is someone from Welfare Rights. They will be able to discuss with you all the details that the Govt don't tell you. AND they will make sure that you get the right benefits.

I would check here http://www.moneysavingexpert.com/family/benefits-check

Don't rely on it entirely but check that and then talk to someone from CAB or similar.

Your HR department should have given you information to help you sort things like this out as they have a duty of care as you were medically retired.

I think you were in the NHS if I remember you saying so go back to them and see if they can help.

It all depends on what type of retirement you were given to what benefits you are entitled to.

Chin up you will get it sorted. Have you thought about trying to see if you can get to a pool and start some swiping as that will definitely help with maintaining and helping with you mobility

Is there a society for your particular condition ? most of them will have a web site with info on what benefits you will be entitled to and how to claim.
There's also a very comprehensive, how to claim, and what to expect, page on the NACC website http://www.nacc.org.uk/content/services/dla.asp it's not specific to Crohns and Colitis so you should be able to get some info from there.
Also try http://www.ageuk.org.uk/ there's a benefits checker tool on there.

Have you got any pensions other than the state one?  If you are retired on medical grounds you can take your pension now and may be entitled to a higher amount as a result of your ill health

Thanks for all your comments and suggestions.

I have a small pension which was frozen some years back and they are letting me take a lump sum to pay off the short fall in my mortgage endowment, it was suppose to cover £22.000 and is paying out just over £12,000, I could have stuffed my payments in my mattress and come out with more money, then there is £890 per year after that.

I have been turned down for the DLA because I can walk 100yds, that has deteriorated alot recently so I have asked them to reconsider, no medical, no contact made with my GP who said I should have no problem as folk less disabled than me have been accepted, I am getting kicked in the teeth from all sides. I just want to be allowed to become independent again, it's not much to ask.

My disability is osteoarthritis caused by man handling patients for 40 yrs, as a 17/18 yr old I was turning adult patient who were encased in plaster from armpits to toes, it was the done thing so you didn't question it, by the time the gadgets for lifting and handling had been brought in[not suitable for all patients, you can't tell someone who is navy blue and gasping for breath "just hang on whilst we get the hoist, right size sling etc",they would be dead when you got back] the damage had already been done. No incident form completed[ no such thing back then] when I ended up spending a month on traction when I was assisting in a post op Xray of an unconscious patient, when the sister said 123 lift the girl opposite me didn't and I took the full weight of the pelvis and lower back, I had to be taken out of my room the next day, crying in severe pain despite the injection of Pethidine the orthopaedic consultant had given me prior to trying to move me, in a wheelchair and down in the laundry lift, Xrays showed an abnormal curvature in my spine where the muscles were in spasm distorting the shape of my spine, I was just short of my 19th birthday,this problem flared up several times over the years, most of my other joints have become affected and after losing 10 stone in weight my hips which had always been fine joined the party last year, I have been on Morphine orally [too many peaks and troughs in the effectiveness]and then Fentanyl patch since 2006,you may ask why did I continue, I had a mortgage and didn't want to lose my house, I still may as I still owe £4000 and the courts have given me a breathing space to come up with a solution, I was almost 56 when the NHS kicked me into touch last September before I went on sick leave again, last time was 2009.

I have been crying for most of the afternoon, not many people in this day and age can say they have done the same job for 40yrs, my Dad was made redundant after 14 yrs and then 10yrs but luckily my Mum had inherited my grandfathers house and they sold their current home and invested that money but Dad died 3 yrs later and Mum moved nearer me 4 yrs later in 2000, the payout from the investment is very poor but she lives in a very nice bungalow and changes her car every 3 yrs or so and does what she wants to when she wants, that is what I hoped to do in my retirement, nothing extravagant,never had a foreign holiday so no intentions/desire to start.

Going to see the GP on Thursday, was told today that the senior partner who I have known since she joined the practice in early 80's has suddenly announced her retirement and won't be doing another surgery at our practice again, I now have to bring another GP up to speed with all my problems which are rapidly getting worse without boring her to tears and sounding like a hypochondriac.

Will go and give myself a kick up the "jacksy" if I can reach without doing myself a mischief.

Speak to an independent financial advisor - they are usually free they may be able to help you with the endowment shortfall and the like

Don't let it wear you down Rhodach, I claim some benefits and it is totally confusing. Definitely pop into citizens advice, sometimes you have to wait a while for an appointment but they will know what you are entitled to and will be able to help with asking for a reconsideration regarding the DLA.
I get DLA mobility because I fractured my spine and hip and can't walk very far or quickly but have been refused ESA this year.
I'm also asking for a reconsideration and it is upsetting and a shock to begin with because the letter basically said I should get a wheelchair as then I would be able to go further. At first I was just going to accept it but my GP and friends encouraged me to challenge the decision, and having support does help. It might be worth paying the fee to get copies of all your medical reports/records about your condition for your DLA reconsideration, I also think you can reapply if there is a worsening of your health, CAB would know.
Also if your income is low you could be entitled to some council tax benefit which you can check here
http://local.direct.gov.uk/LDGRedirect/index.jsp?LGSL=63&LGIL=0&ServiceName=Check%20your%20eligibility%20for%20Council%20Tax%20Benefit%20with%20your%20local%20council
Chin up Rhodach

Did you fill out your DLA form on  your own, or did you do it with help from someone from the CAB?

You quite possibly need to reapply, rather than reconsider the current application - depending on how you did it..

If you gave them the bare min. of information and did NOT fill out all the extra spaces for 'more information', if you did not provide supporting evidence in the form of letters from consultants etc... and if y ou as many people do, filled it out optimistically.. you probably want to re-do it.

Go and measure the exact distance you can walk BEFORE YOU ARE IN PAIN... thats one of the key things - ditto measuring how long you can stand for before you are in pain.

If you are in fact in pain if you walk or stand at all - say so, make that crystal clear. Most people don't because most people with conditions like this are used to trying to tolerate the pain, because if you spent your whole day going 'ow everything hurts' you would be so depressed ... human nature means we cope, get on wtih it, don't really whinge but for the purposes of a DLA form, forget all that, tell it like it REALLY is.

Also tell them if its better/safer if you have help in the form of a person to help you, or an aid such as a stick, crutch, wheelchair, electric scooter.  it does NOT matter if you DONT use those things now.. if it would help you TO use those things, say so!

As an example, one of t he questions on my form was about falling over, it asked how often do I fall over or have I fallen over, - well I am liable to fall over any time I walk unsupported (I have a connective tissue disorder which means my knees, ankles hips etc can slip or dislocate), but at the time of filling the form in, I hadn't fallen over in two years... because I didnt GO anywhere unsupported so I couldn't fall over.

I was initially going to put 'I haven't fallen over in the last two years' but thats not the right answer, the answer is ' I am likely to fall over any time I stand up, but I have not stood or walked unsupported in the last two years, therefore I haven't fallen over recently'

You do need to read between the lines somewhat and you do need to spell things out and repeat those things wherever relevant - do NOT rely merely on a diagnosis either because lots of conditions can affect people differently - other people with my condition are wheelchair bound, whereas I hve gone relatively unaffected for nearly 25 years and only the last 6 years or so have seen my mobility really fail.

These sort of forms never seem to suit the situation that you find yourself in - the question that always throws me is how far can you walk I always want to ask what day as some I could do a fair way given time on others I can't manage the bathroom. And this must depend on the amount of pain the person can cope with.

Can't offer advice but don't give up ask for help of anyone you can think of including your union.

I have spoken to various advisors re the shortfall because for years I was told my endowment was taken out before the ones that there was a problem with and not to worry, the payout mentioned when I took out the endowment was £44,000, when I got the first letter I rang and was quoted £38,000, by 2002 when I changed to part repayment and part interest I was told it would easily cover the original £22,000 so set the interest only at 18,000 thinking I had it covered, all my conversations were over the phone and I had jotted date,time and who I had spoken to on the latest letter but that counts for nothing,the endowment is now with the third firm and they are washing their hands of what the previous owners have done with it, my Dad must be turning in his grave as he went with me to set it up and as a single parent it seemed ideal, the mortgage would be paid off if anything was to happen to me or a nice lump sum if I survived till the end.

Have you put through a misselling complaint?  If not do it.  Then take it up with the fsa if it is rejected

I filled in the form myself with a couple of phone calls to ask questions, I went into lots of detail re pain and limited mobility,I wasn't applying for the carers part of DLA, only the mobility part, I was honest, I am never painfree but recently the falls[ my knees lock or buckle] are at least once per week but usually inside so that didn't count, I'd fallen in the "glory hole" whilst trying to read the gas meter 2 days before filling in the form and had 2 very bruised knees as the floor is concrete, one knee cap has a dent it didn't have before, just relieved it didn't fracture. Lying down is my most comfortable position these days, standing and sitting for anything longer that 1/2 an hour means I will suffer for a few days.

I have photos of the inside of my Rt knee taken in 2006 showing the loose debris before it was cleaned up and flushed out, given to me to use in the future, I told them I had them to show at a medical but didn't want to trust them to the post, that surgeon said I'd be in a wheelchair in the next 2 yrs, he couldn't see how I was still working 30hrs per week on an acute medical ward, 18 pts and one other nurse at night, I am struggling to stay away from a chair, my house doesn't suit a wheelchair, no downstairs loo and it is a slippery slope to bed bound.

Those people making these decisions have probably not suffered with chronic pain 24/7, if they had then they wouldn't be so quick to judge someone like me.

Thanks again for all your support.

I let the girl from the CAB fill in my appeal letter for ESA and didn't feel she put in enough info and it was only after a detailed phone chat with a very sensible older lady at the ESA decisions dept that my claim wasn't rejected for a second time, she asked questions about things I had wanted to include but was told if it went to tribunal I could bring them up then, this was why I opted to complete the form myself and include the info I wanted to put there.

I am still waiting for my medical form and medical re the ESA[ original ones were posted through an unoccupied house in the close and I got a letter rejecting my application for non attendance 2 months later], will go and rattle them up after I have been to see the GP and got my latest sick note, I stay on reduced benefit till after the medical from what I have read, they still owe me money from Jan to April as they lost the sick notes but won't pay me from the 6 week one from April onwards, trying to get through to them that it is a big deal for me to go out and I try and do lots of things on one visit to town as it is only one trip for my Mum to drop me off if I am OK to be left on my own and if she can pick me up later or get a taxi home again.

This is the Governemtn webiste page when I typed in benefits for sick adn disabled: http://www.gov.je/benefits/sicknessinjury/Pages/index.aspx

Barbara I was thinking this sounds OK till I read at the bottom you need to let them know if you leave Jersey and realised in was for the island of Jersey LOL

> the question that always throws me is how far can you walk I always want to ask what day

I think you should always answer from the perspective of the worst days.

I just picked the first one there is a main UK one. 
Think this is it: http://www.direct.gov.uk/en/moneytaxandbenefits/benefitstaxcreditsandothersupport/index.htm

Thanks Barbara

Good luck,Rhodach.Ive been moaning lately about being broke since I retired and having to go cleaning to make(dog )ends meet,but at least Im fairly fit,you put things in perspective for me a bit,but I do sympathise and hope things work out for you.Theres nothing worse than constant pain.
When I first retired,I picked up a load of leaflets from the local council offices,and one of those was odd jobs help for a small fee-might be worth looking,for help with your garden?

on all benefits forms, the how far you can walk and other related questions, you need to answer if you are have a worst/bad day. don't lose hope xxx suuch a long winded process

Thanks folks, it has been such a change in my circumstances not just due to my deteriorating health.

I am going to get some documents photocopied at the CAB tomorrow[I can't get up to their office so I sit at the bottom of the stairs and phone up and someone comes down to me, for proper appointments they meet me somewhere I can access] so will ask about the help with the garden

Mum filled in the form for my nanner with the help of age concern. One thing they said was,
Can you get out of bed ok?
With nanner she could if she used her electric bed to sit her self up then she moved round and sat on the side for ages then manouvered herself out. So yes she could but with ALOT of help and adaptions to how someone without any problems could.
So her answer should have been no.
How far can you walk.
half an hour in constant pain
So you cant walk at all without pain.
I dont know the wording to use, but maybe a call to Age Uk (I know you arnt old but they might still be able to advise)
Hope you get it sorted.
Lea :)

Oh and we do customers gardens that get carers allowance, and when they were their assesing them, we were there, and the women actually said that she would put the gardening down as she couldnt do it herself. So helped pay towards us :)  So you may be entitled to that :)
Lea :)

Years ago I started to make adaptations to my home and garden for the days when I knew I would need them, built in 2 beds, one the sides are 18" and the matteress on top and the one I use which has 24" sides then the mattress, when I swing my legs out I am standing up so no forcing my hips/knees to extend when I am stiff, the loo is on a raised platform, armchair has booster cushion but my computer chair is best for those periods I can sit for.

My back garden I gravelled 12yrs back at least, small easy maintained mulched borders[using shreddings from shrubs] my remaining planting is in pots, tubs etc which can be raised to a comfortable level for maintainance, it has got out of hand because I was was wary of injuring myself and not being able to work, the worst is the elder flower which seems to have appeared from nowhere and other invasive things from other gardens round about.

My front garden is 2 small patches of grass, one on a slope and one small mulched border, my plan is kill off the grass as it is mostly dandilions, used to be free of those due to my diligence, cover in weed suppressing membrane which I already have plus the pegs to anchor it down, till I decide what to do next.

I have a 30yr old estranged son who I have not seen or heard from since the day he came to bury his childhood dog in July 2005, my Mum called in on his father a few months back to let him know about my deteriorating health and to try and get my son to at least visit, she didn't tell me till 3 weeks ago and there has been no change that situation.I raised him alone from 3 months old till he was 14 and decided I was too strict and wanted to go live with his father and aunt, they brought him back after a week as he refused to eat anything other than MacDonalds and they let him get away with it but lived out in the country so had to drive miles, I told his father that he encouraged him to go and stay with him, I had spent 18 months trying to cope with with bad behaviour etc. and couldn't cope any more. Now it turns out they have never taken any money from him despite him earning good money since leaving school, they now want to move away to another area as both are retired but my son refuses to find other accommodation, they only have their selves to blame, they have spoilt him and now it is coming back to haunt them, he was very able when here to do jobs around the house and garden, his reward was if everything was up to date at home then we went out at least once per week on my nights off, may only be the pictures or a meal in term time but during school holidays we had proper days out.

My 2 brothers live down south,both single, one has only been to see my Mum once since she moved back here 12yrs ago and the other one manages 0ne Xmas in 4 for about 4days, he has promised to come up and stain all her fence panels this summer but won't give her a date, I am not holding my breath, so no point in relying on family members. My Mum has a gardener who cuts her 2 patches of grass once a fortnight, I was horrified to learn he charges £15 a visit and started at the beginning of March before the grass had even started to grow, he does 3 gardens in a row, strims all the edges first then goes back to the first one and mows each grass, doesn't sweep up after him and then moaned at Mum about a tree root that had come to the surface, trees been gone for over 2yrs now, his mower kept getting caught on it.

As I said if I got help to get on top of the garden then I am sure I could keep on top of it as I have done in the past, a few hours working at my own pace each week, it does lift my spirits admiring my handy work

You should answer all the questions as a person would expect to do things with no adaptations or aids, (trouble is you learn to adapt and often can't remember what you used to be able to do) unless the question specifically asks how far can you move with a cane, answer how it would be without.

In other words all the things a fully able bodied person would do easily without thinking, climbing stairs.

A friend of mien who had her leg bones fused as a child when they removed her knee joint as it had become gangrenous from a fall off a child's scooter in the garden.

her leg is therefore 4 -6 inches shorter and life over the years has ruined her hips, remaining knee and back.

She can't use the bath, and had to build a shower cubicle in her kitchen.  It does seem that they try very hard to refuse DLA claims if they can just get away with it, and having a GP/specialist on siode to fight your corner helps.  Get the doctor to write a letter on your behalf to include with the claim, as they don't often bother to contact them.

She cannot walk more than a few yards and that only on level ground, but she filled the forms in with how she manages (she bought a disability scooter) and a very unsympathetic doctor claimed she can't have mobility issues as she owns big dogs.  the fact her adult son walks the dogs that need more exercise (most of them are now oldies and won't be replaced) and the others she walks with the scooter.

After they refused her DLA she never applied again, which made me very cross as she is so obviously disabled and really wanted help for her car, which has to be an Automatic.  Now she can't claim it as she is over 60.

I wanted to show I hadn't just allowed things to get bad, I had thought ahead to the future and as a very capable DIYer did things which I may not have been able to do later,constantly thinking how I could adapt things for my needs etc.

I am hoping they overturn the decision,if not I will go to tribunal and get face to face time and get supporting letters from my GP, not on the books of any specialists at present as my next option is joint replacement, still too young unless I go off my feet completly. I can go back to the Pain Clinic but have really reached the extreme of pain meds that a non terminal patient would be offered, need something to deal with the break through pain when I really need to be active such as going to appointments, meetings etc.

BTW the cut off age for applying for DLA is 65 now that men and womens retirement age is the same, I am sure they hope like your friend I will just go away, I won't as it will make it look like I was lying about how bad things really are.

> I wanted to show I hadn't just allowed things to get bad, I had thought ahead to the future and as a very capable DIYer did things which I may not have been able to do later,constantly thinking how I could adapt things for my needs etc.
>

You could also let them know that you lost 10 stone as an indication of how much you have attempted to help the situation yourself.  That is a remarkable achievement.

> I wanted to show I hadn't just allowed things to get bad,

Unfortunately that isn't how it works.
I tried for 10 years to get help for my anxiety and depression issues, I even filled in a questionnaire and was told I wasn't sick enough to get help. This is despite the fact that when I was at my worst, the doctors never saw me because I couldn't leave my home on my bad days.

I moved to another area and thankfully I managed just the once to speak to a doctor direct on the phone at my lowest ebb... that was enough and it was like being given a magic key. After a decade of being fobbed off, I finally got to the right people.

As has been said before, they DO need to know you at your worst before they can do anything. This takes a lot of courage, and initiative, to do... Put aside your pride and find a way to describe - or even record - your bad days, because that's what they need to see.

I was called up for one of these medical interviews once, and I was so stressed about it I forgot to take my medication the night before. How I got there, I have no idea, but the interview was terminated because I broke down. At least they got to see how I was without my meds... and that is no different to  assessing someone without a stick or other walking aid they need in order to function. They do need to see you at your worst - however distressing that may be.

Currently dealing with my elderly mum who needs a lot of help, and while she will tell them that "everything's OK" and she's happy, when I have to tell the care workers exactly how she really is day to day, she crumbles and cries her eyes out and looks at me like I'm telling lies... I feel so bad but she is lucky to have me as an advocate... If I'd had an advocate friend all those years ago I might have had help sooner and not been left in limbo.

It's worth going to tribunal as they are totally independent of the people assessing the claims.

> At least they got to see how I was without my meds... and that is no different to  assessing someone without a stick or other walking aid they need in order to function.

I think I would disagree with that.  I would need a tremedous amount of assistance if I did not put my glasses on everyday but I have them and nobody would consider me disadvantaged.  I'm not. 
I think support should take into account the medications/aids that are regularly used as this is the general state of affairs.

Stooge as usual you disagree with any subject I post about on CD.

I am livid, paid £4 for taxi from GP's to job centre with sick note to be told I couldn't hand it in there, given a pre paid envelope and told to take it to the post office, I tried to explain that the last time they faxed the sick note over and the money was in my account later that day but she was having none of it, I even showed her the diagnosis on the sick note and the pain and distress walking round to the post office was going to cause me but she wouldn't budge so I am back home looking like a drowned rat,less money in my purse and knackered too.

I put a note in with the 3 month sick note with some queries and asking them to confirm receipt, when I am calmer I will ring up and complain.

Dr has added Codeine 60mgs 4x a day max. for break through pain and if that doesn't work then may try Oromorph or another opiate.

My fasting blood glucose that I was asked to have repeated was only 0.2 above normal, here's me worrying it must have been into double figures if it needed repeating.

My weight loss not due to dieting has now reached 10 stone[probably more if I was to lose the excess flabby bits on my bum and belly] in the past 3yrs with no obvious cause, was great to start with but now is worrying, I have struggled all my adult life with my weight, folk have told me I have never looked as heavy as the scales say, must be true that some folk have denser/heavier bone, all other bloods are normal, no lumps or bumps or altered habits, to be reviewed after repeat fasting glucose.

Will update if I have any news.

> xmlns="http://www.w3.org/1999/xhtml">I think I would disagree with that.

It is a bit of a grey area - I see your point about glasses as I wear glasses myself and without them I certainly cannot leave the house (I cannot recognise peoples faces, I cannot judge how fast traffic is moving, I can barely read anything not right under my nose), but extreme short sightedness is not considered a disability.. I guess because with glasses you then lead a normal life (unless the dog eats them)...

You cannot seriously compare though, requiring a scooter or a powerchair or a crutch.. to wearing glasses. My crutch and my scooter allow me to do SOME of the things I did before - I can walk my dogs, I can get to SOME shops.... but I can't go for a day out at the drop of a hat, I cannot trundle off to do a new walk along public footpaths without some serious forward planning, and contingency plans for when I discover I cannot negotiate a path or have to turn back as there is a stile..

Most of the aids will give a disabled person an approximation of able bodied life, they don't magically restore it - and these things cost MONEY, money an  able bodied person does not need to find.

For example, MY scooter cost £8000 - I am extremely lucky I did not have to fund that myself ( my Dad did) - otherwise I would be limited to pavements only (mines a custom build off road beast!) - and thats IF i could have afforded the cost of a larger scooter, you don't find the kind I need second hand particularly cheaply unless they are knackered.

Then of course theres the car - I can't use public transport particularly often or for many journeys (and in addition, it don't go where I need to go!), so we need a car, and we need a much bigger car than if I were able bodied.

DLA is whats known as a 'gateway' benefit - there is no longer any such thing as 'registered disabled' because that was deemed wrong.. but we still need a way of putting people into categories and effectively, receiving DLA means you are officialy disabled. It opens the door to other things, for example the motability scheme, in most areas you cannot have a blue badge for parking unless you are in receipt of DLA mobility.

Even wheelchairs, should you need one, are a pain in the rear to get, months waiting lists to see people to get fitted for the right thing and the NHS chairs are DREADFUL (and forget powerchairs, very very few people get one of those on the NHS) - you can opt for the vouchers towards the chair of your choice but then you need to find THOUSANDS of pounds to make up the difference.

Being disabled is really expensive, most of the aids you can get will NOT mean you are able to do all the things you did before you were disabled/all the things an able bodied person can do so it is NOT fair to consider a person with whatever aids they need to be the same as an able bodied person!

Link didn't work for me

I too wear specs, have done since age 6yrs, never thought of this as being a disability, had I gone blind as my parents were told may happen then that would have been a different story, prescription never changed till my late 30's when I needed varifocals, I would have made a great watch repairer as my close work minus my specs is fantastic, all that small print on food packets becomes so clear.

> You cannot seriously compare though, requiring a scooter or a powerchair or a crutch.. to wearing glasses.

No I wouldn't, my point was if there is a simple aid that you use regularly such as glasses, a joint support or even a stick and that aid allows you to function well then you should be judged at that level not as one with that support taken away because why would it be?
Similary with regular medications.  Why would you judge that person without them?

> too wear specs, have done since age 6yrs, never thought of this as being a disability

Wearing specs is certainly not a disability.  Not wearing them could be! :)

> I think I would disagree with that.  I would need a tremedous amount of assistance if I did not put my glasses on everyday but I have them and nobody would consider me disadvantaged.

There is a HUGE difference between wearing glasses and needing support in the form of properly prescribed medication [not from a GP but a specialist by a referral]. I have also worn some form of sight correction since I was in my late teens but getting that arranged is a totally different matter to getting help for other medical issues.

Yes if I decided not to put my specs on or my contacts in, I'd probably get run over by a bus.
Without my meds I might feel I want to get run over by a bus.

I can't get these meds by going into Boots or Specsavers. If I forgot to take them I'd be a mess. If they stopped making them or the doc decided I should change to something else, I'd also be a mess. I've seen this happen first hand over the last year with my elderly mother, and now I am her carer 24/7 as she has regressed and they haven't yet found a medication that suits her as well as the discontinued one did. She's almost housebound now because of that and sadly that means I am too as she can't be left on her own any more.

And if my meds changed I'd not be capable of caring for her - and TBH I don't feel very capable anyway.

> There is a HUGE difference between wearing glasses and needing support in the form of properly prescribed medication

There may be but that was not my point at all. 
My point was, where a support or medication is regularly used with good effect that is what people should be assessed on.

    > There is a HUGE difference between wearing glasses and needing support in the form of properly prescribed medication<
There may be but that was not my point at all.  My point was, where a support or medication is regularly used with good effect that is what people should be assessed on.
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Why are you still banging on about glasses and likening them to medication and disability aids there is no comparison, when you reach for your glasses and put them on you know what your eyesight will be like all day, in fact so reliable you do not even think about the condition of your eyes, this can't be said for medication or disability aids in general - you take your medication but you never know how you will feel that day, you may have a chair but unless someone helps you you will not be going very far. My medication does not change but my ability to move does and it does it from day to day, my glasses do not let me down however, it does not seem too hard to understand that glasses deal with one known condition were as medication and disability aids treat the whole being and only one of these areas not being up to the best possible condition means the whole being suffers.

So given that you have the odd good day are you saying this is what you should be assessed on?

> My medication does not change but my ability to move does and it does it from day to day

Then that is what you should be assessed, what you are like with your medication or aid and if that is not consistantly good then of course that should be taken into account but the fact is some aids and medications are reliable and do enable people to be fit for work just as my glasses do.

I don't know why people keep "banging on" that glasses don't count, without them I most certainly could not work, could not even get to work as could not drive or catch a bus, and yet none of us would consider me disadvantaged in anyway because I have got those glasses and this is my point and why I have used them to illustrate it.
And which is why I said, when an aid or medication is used to good effect I cannot see why someone would not be assessed with that aid or medication.

Do you think that people whose treatments or aids work well should not be included as fit for work just because they would not be good if they stopped them?

I don't know why people keep "banging on" that glasses don't count,

Of course they would count if we were talking glasses and eyesight but they are not the slightest bit relevant to the problems expressed by the OP. Lets get back to helping with the points raised.

> if we were talking glasses and eyesight

I'm not, I'm talking about aids and medications that make people fit for work but you are right it is off the original topic :)

Putting someone in a wheelchair because they can't walk will give them mobility but it won't take away the pain and the struggle, that is the same for all aids, a walking stick may help but it won't remove the problem.  I hope you get sorted, there is one place you can try for help with benefits and that is http://www.benefitsandwork.co.uk/forum there is an annual fee of about £20 but if you sign up for emails you will get an offer for a few pounds off.  A friend of my was in utter despair in a similar situation as yourself and with their guidance was able to claim IB & DLA.  It may be worth joining.  Good luck :)

> Putting someone in a wheelchair because they can't walk will give them mobility but it won't take away the pain and the struggle, that is the same for all aids, a walking stick may help but it won't remove the problem.

If, despite the use of aids you are in pain or struggling, then that is what you should be assessed on! 
The point is not everyone in a wheelchair is in pain or struggling though and many do work.  Should we assess them without their wheelchair?
Nor is everyone using a stick prevented from working, again I know this from personal experience.  I used crutches and sticks with a leg in plaster for almost 3 years following an RTA. 
Apart from the first month of which I spent three weeks in hospital I continued to work throughout that period.  Of course I was not a nurse in those days or I would not have been able to do so but I was able to do a perfectly capable clerical job despite it being a donkey jacket and welly one on a power station building site :)

To Stooge, I try never to get involved in controversy on here and generally only contribute if I think my input may be useful. On this occasion I am struggling to keep quiet!

From many of your posts on here it is obvious you love a good debate/ argument, nothing wrong with that, however, I do wish you could refrain from being so argumentative where the OP is clearly distressed and needs helpful advice and a bit of sympathy. My personal view is that most of your input on this subject hasn't really been relevant!

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Rhodach, you have been given good advice by many other posters and it is plain that everyone feels for you. It is disgraceful when someone has tried hard to help themselves, that it is so difficult to access the help and a bit of financial support which would make all the difference.

One poster mentioned seeing a Welfare Rights Adviser, I know in our area they have a remarkable record of obtaining benefits people have been unaware they were entitled to claim.  Keep your chin up, you are clearly a strong person and I sincerely hope you get the support you so deserve.

Thankyou Bestdogs.

During my long career as a nurse thinking changed, initially we were encouraged to wait on patients hand,foot and finger, it was then realised that this was doing them no favours so maintaining their independence was the mantra adopted, giving help only when needed, in 1995 my ward General Medicine became part of the Chest Unit and the 2 most senior nurses myself and Chris the ward sister were sent to one of the other wards to be "educated", I was allocated 6 patients,none were bedbound or heavily reliant on O2, I went into the bay of 5 patients and introduced myself and asked who needed a bowl for a wash and who would be going to the bathroom, they all opted for the bowl, I came back with the first bowl and told him to give me a shout if he needed a hand with the bits he couldn't reach, carried on till I reached the 4 patient who said he would wait till his wife came in as the nurses usually washed them each morning, I was horrified and told them that this wasn't the way things are done these days and they needed to maintain their independence for as long as was possible and I would help where they had a problem, he reluctantly agreed to see to himself and I washed his back for him, there was lots of banter from behind the curtains between the other patients and myself who had now progressed to doing the meds.

My 6th patient was missing from his sideroom each time I stuck my head in the door so presumed he was somewhere having a wash, when I got to his meds he was back standing looking out the window, I introduced myself and checked he had been for a wash, he hadn't, I asked him where he had been for the past hour, he said "went for a paper and some fresh air[fag]", I gave him his meds and asked if he was having a wash at the sink or going to the bathroom, he told me the nurses normally washed him, I told him if he was well enough to go down for " fresh air" then he was able to cope with his own hygiene needs, he muttered something unsavoury as I left the room.

I met up with Chris at coffee time and she too couldn't believe how molly coddled the patients were, she thought the ward must have had shares in Drapolene as if it moved this morning she had been encouraged to apply ample amount[ usage of barrier creams routinely had been phased out sometime ago] we had a good laugh and agreed that would not be taking this back to our ward at the end of the week, we didn't learn anything we did not already know.

By the end of my 5 day visit the chaps were much happier, more mobile,less likely to ask for help and one wife came and asked if I had been giving out "happy pills" as she had seen such a difference in him on this admission and he couldn't stop talking about me and my " new " way of caring for them.

We did get patient back on our own ward who had been used to the chest unit routine, majority were happy to do what was asked, others asked to be transferred but weren't and said they would refuse to come back on their next admission, they were still sent back to us, many "frequent flyers" were extending their time at home between admissions which was all good.

This tale is to illustrate that just plonking someone who is having problems into a wheelchair prematurely isn't going to help getting around the need for help, financial or physical, it is going to speed up the decline due to muscles wasting due to lack of use and then transferring into the wheelchair will become a problem and so on.

I want to stay independently mobile for as long as I possibly can, the longer I stay in the house because I can't afford to get out and about the more depressed[ tried meds but needed to deal with cause as pills didn't work] I get and more of an effort to go out unless it is really necessary, even a wander round to Mums which I would do on the spur of the moment 18 months ago has to be seriously considered based on how I felt at the time and whether I can be bothered.

Sorry it is so long.

This tale is to illustrate that just plonking someone who is having problems into a wheelchair prematurely isn't going to help getting around the need for help, financial or physical, it is going to speed up the decline due to muscles wasting due to lack of use and then transferring into the wheelchair will become a problem and so on.


You illustrate your point very well.Couldn't agree with you more. I am not surprised meds didn't work- no expert - but I would say they didn't, because you are not clinically depressed! You are depressed by your circumstances as I am sure I would be too.

It is incredible that after all your caring in the NHS you have been cast adrift by your former employers. Does your PCT have someone whom you could contact for advice?

I am mostly proud of our country, but have to say your troubles make me feel ashamed.

Rhodach, I have just found this   Cavell Nurses Trust   http://www.nurseaid.org.uk/  might be worth you contacting them.

You probably already know of them, but thought I would mention it in case you don't  :)
        

They had been trying to get rid of me for a long time but I have managed to bounce back before they managed it,they tried to redeploy me but wouldn't tell me where to till I agreed and the union warned me they could say 6 months down the line the job no longer exists, they could get more junior nurses for what they had to pay me, everytime there has been a pay scale restructure I have been on the top rung of the ladder, the last time it was stated that those of us with extra skills[ taking bloods from veins and arteries, catheterizing both sexes, passing nasogastric tubes to name but a few] would be rewarded by climbing into the next grade up but it never happened, there are nurses who attend all the courses to get the paperwork but never use them on the patients, in those cases then they should go down an increment if they can't prove annually that they have performed such skills at least X number of times.

Whilst on nights I would be called on to go and do procedures on other wards, the night managers would ring to see if I was able to help, it depended on the urgency as to whether it could wait till my own patients were settled or I had to go there and then,only once did I refuse as I had too many really sick patients to leave with just the nursing assistant.

One New Years Eve I grabbed a patient off another ward and brought her back with me as the way they had been dealing with her chest drain was life threatening, I then rang the bed manager and told her what I had done, by the morning she was so much better that her husband felt it was OK to go home for a few hours, there was a Thankyou card waiting for me when I returned after my nights off.

At the end of last year I got a letter I probably shouldn't have saying that due to our hard work in reducing the length of stay of patients they were going be closing down one of the chest wards and those nurses would have to apply for jobs elsewhere either on the unit or other dept., so our hard work has meant us losing jobs. During most of the year there was chest patients outlying all over the hospital and then the winter crisis ward would open up and need staffing so numbers of experienced staff would go down on the other wards between Nov and March. We worked hard following all the new rules and criteria and it comes back to bite us on the bum.