This is the process we went through, including mistakes
we made along the way to get to where we are now with the adaptations to our flat. We live in a very small one bedroom flat, and before theamputation, we were looking to save to move into one of the two-bed flats across the road, hoping that once we had the deposit and first month’s rent there would be a ground-floor available. We still had this in mind when Chris had the below-knee amputation, although we knew that if we got one, work would be needed to make it more suitable, and it would probably be delayed for quite a while.
However, once Chris had been rushed to hospital, after it
had taken me three weeks to convince the medical profession, including our own GP, out-of-hours GPs, the hospital physician and all, that the angioplasty had indeed gone wrong from the word go, and the amputation was done, we’d got
through the first psychological hurdle of losing the leg (Below the knee) so quickly and all the trauma that involved, I then
started to try to find out how on earth we get things done, who to talk to, and when. Of course no information was available at the hospital. All they could tell us was that after a week or so they would put Chris forward to go to Pine Cottage rehabilitation unit at the Colman Hospital, where he would receive physio and learn to adapt to having a missing limb etc. The Norfolk and Norwich occupational therapist, with regard to future needs once home, was about as much use as a chocolate teapot (and that is not taking away her skills as on OT within her remit, she was excellent in fact), there was no literature for us to take away and use, nor any hint of where we might get some.
So, internet it was…but I could find nothing on how to take those first steps into the minefield of bureaucracy involved in
getting adaptations to the flat. As it was I was getting extremely stressed with jumping through hoops to change from my jobseekers allowance, to his claim for ESA, which is a whole new story I won’t go into. Suffice to say that when (not
if) they become obstructive and start coming out with any excuse not to pay you, speak to you as though you’re a criminal trying to scam them, get your local MP on the case. They tend to move in the right direction then.
Eventually, the OT from Pine Cottage visited Chris in the
N&N, and at last, a hint of how to go about this. She gave us a
self-assessment form to fill in which would then be sent to Norwich City Council. As this was happening, I’d already phoned NCC and downloaded the same self-assessment form and sent it off, but filled it in anyway and left it with Chris to hand back to Sue, the OT.
Three weeks passed, and we heard nothing, Chris was becoming more and more homesick in the hospital, and very depressed, not about losing the leg, but about being in hospital, especially when all he had for company during the third week was the old gentleman opposite who had Alzheimers, and the middle aged man next to him who had learning difficulties and could only talk about steam trains, and was constantly being sick…loudly. Eventually, he
demanded to be allowed home, and though I was nowhere near ready to begin caring for an amputee, and knew he was physically nowhere near ready to come home either, emotionally and mentally something had to be done. So home he came and day visits were arranged for rehab, as they couldn’t get him in for another four weeks, so he said he didn’t want to stay on that basis, and we lived local enough that day visits wouldn’t be a problem. I was exhausted by the time he
came home, with the initial trauma of the gangrene he suffered, knowing he was seriously ill with extremely low blood sugars (1.6), extreme agony in the foot, all the signs and symptoms of infection, blackening toes, all of which had been
largely ignored as ‘normal’ after angioplasty (really?). Add to that, rushing backward and forward to the hospital, eating at odd times, moving furniture round to adjust for a wheelchair all by myself, while trying to be careful not to damage my own replaced hip, I was basically at the end of my tether, and
still hadn’t had an ESA payment to live on, so no money coming in. Thankfully Chris’s family had a whipround and helped us out there, which was a life-saver.
After a few weeks, Norwich Social Services got in touch
with us, and arranged to come round for an assessment of the flat, which they did a few days later. This involved the Social Service Occupational Therapist filling in a questionnaire, and assessing the flat to see what adaptations may be needed. At the time, Chris was able to hop along using a zimmer frame, and just about manage to get through the bathroom door, as long as he wore his compression sock that is. But getting into the shower was a problem as the shower tray was about 8 inches off the floor and so small a cubicle that it would have been impossible to put a chair of any sort in there, and the
position of the hand basin meant it was completely out of reach. We have a 3-4ft bank outside with steps, so a ramp was needed, but that was questionable as the gradient might have been higher than the maximum 1:12 required, which could make it just as dangerous as the steps.
The SS OT explained that there were other options, which were to a) ask the council to re-house us, which they would have to if the landlord we rented from refused to allow adaptions, or b) look for a ready adapted alternative private rented property. If we chose to go for the adaptions we would be committed to living in this property for five years
minimum.
Re-housing by the council was not really an option, though it was one we looked into, because first, I’d already spoken to our landlord about the possibility of having the adaptations done, and he had verbally agreed. In fact he said, “They can do what they like as long as they pay for it”, and secondly, because I was the one making the enquiries, and because I had previously been evicted from a council house following my divorce having been unable to pay the bills on my meagre wages, they wouldn’t even entertain the idea.
So here is our first mistake. We wanted to keep all our options open, so we said, we’d like to go for the adaptations, but would also like to look into renting an alternative property. We didn’t want to move far away, we still had our eyes on the flats
across the road, and we like it here. So the OT went away with that and we didn’t hear anything for a couple of months.
Meanwhile, the scar became infected. In fact it had been
weeping since he came home, so it may have already been infected, we just don’t know, but falling on it three times in the first two weeks didn’t help. We had district nurses visiting every day to change dressings, umpteen courses of strong antibiotics, painkillers, and all sorts, and a couple of months later the wound looked like it was healing nicely. So much so that Kevin, one of the district nurses, came in on the Monday and said, “Right, I’m going to reduce our visits to just twice a week now, you’re doing so well.” Then Chris held his once more weeping bandaged stump up, and he said, “Well, I might, depends what’s going on in here, it doesn’t look too good”. Undoing the dressings, it became evident that the wound had come apart, so back he went into hospital again, this time to have the knee removed. There wasn’t quite enough circulation to heal the wound below the knee, so they had to take more off rather than open it all up, scrape out the infected tissue and try again.
Once the knee came off, it became evident that hopping
around with the zimmer frame was no longer a possibility, but this time, there was a bed available in Pine Cottage, so within a few days, Chris was taken there, where he was with other amputees in the same position, which was much better. Also a much more informal atmosphere there, which meant emotionally andmentally he could cope much better with it, even though the homesickness was setting in again. However they were daft enough to offer him a choice of going home that week, which he immediately accepted. This got them in a panic and they phoned me to see if I was ready (I nearly cried as nobody had taken me into the equation before), which I said, no I wasn’t ready, it’s been too stressful over the last three months, and I need him to be there a little longer. Chris agreed another two days! At least I had two days to
prepare…
Once home, and he was brought home by Sue, the OT and assistants, She did a quick assessment and said he wouldn’t be able to get in the bathroom as the door was too narrow for a wheelchair, he’d need a commode, which duly turned up within the hour.
So our need for adaptations became more pressing. Once Christmas was over, I phoned the Social Services and spoke to their OT who duly informed me that as we were looking into moving he’d closed the case. I argued that I didn’t want the case closed, we were still interested in the adaptations, but wanted to keep our options open, but the case was closed anyway. I gave up and we looked at our finances, (by this time DLA and ESA back payments had come in) which, after
catching up with unpaid bills and direct debits, amounted to very little we decided that it would take the best part of a year to save enough to move, but we could do it. We’d grin and bear the commode situation for that time. However, knowing it could take up to a year for any Disabled Facilities Grant to be
given, we decided to hang on to the option of moving but asked Social Services to keep the adaptations open.
However, that was also wrong, because, in these times of austerity, we had more financial pressure on us than we envisaged, and we were hard-pressed to save very much at all. On reconsidering around April, when we’d heard nothing further from Social Services, or our landlord, I phoned them
back. I was under the impression that they would do this through the property owner, rather than it’s tenant, but I was mistaken again, and as we’d done nothing since speaking to him in January, the OT didn’t know what we wanted. So I made the decision there and then to go for the adaptations and forget about moving altogether for now.
So the OT paid us another visit, and reviewed his assessment taking into account Chris’s new needs as an above-knee amputee. (for those who don’t know, above knee amputations create more balance issues than below-knee, through loss of ballast basically, which is why hopping around on his zimmer frame was no long viable.)
Even with his new prosthetic leg (George) Chris couldn’t use it for very long as he has some stump issues which still need dealing with), so in the main, getting around for Chris involves the wheelchair 99% of the time.
At that point, Social Services got in touch with a company called Orbit, which, with another organisation Norfolk Care and Repair came and did another assessment on us, with questionnaires, and a full survey on the flat and outside area. At last things were beginning to move. I can’t remember if this was in June, July or August, but around that time.
By this time, Chris had developed another problem. Dairy intolerance, which caused him to have violent diarrhoea, starting after his evening meal and going on to the early hours of the morning, so we’d both be up, sometimes until 4am sorting out the commode. However we soon caught on what
was causing it and eliminated milk from his coffee and cereal for his breakfast. That put a stop to it for a while.
A couple of months went by and we heard nothing from
Orbit, but we waited patiently. In the meantime, the dairy intolerance was back with a vengeance, and I realised it wasn’t a case of cutting down on dairy intake, but cutting it out altogether. That was fun, when things like gravy granules contain milk as a flavouring, only Vitalite margarine is dairy free, and ready made sausage rolls, pork pie (yes I know), or quiches contain pastry made with fats containing buttermilk.
But we got it sussed.
At the end of November we had a letter from Norwich City Council saying they had approved a grant of £11, 100.14p
Suddenly, the Norfolk Disability Services Surveyor Chris
came back round, and was assessing the kerbs with the council, explained to us that tenders had gone out, a tender was accepted from Cookes, a local building firm, and here’s what we’ll be doing…move the boiler from the bathroom to the
bedroom, build a cupboard around it, strip the bathroom out, install new shower, shower seat, wetroom flooring (which meant the concrete floor had to come out) toilet, corner hand basin to make it more accessible to Chris, new
wider door, new front door as the threshold will need to be dropped, concrete ramp and new steps at the front to replace the dilapidated old ones, three new kerb stones, two of them dropped to allow ramp access, (we don’t have a
footpath, so he’s straight onto the road, good thing it’s a cul-de-sac), tiling in the bathroom, paint and decorate bathroom and bedroom cupboard and make good.
The next day he came back again with the boss from
Cookes, who advised that the toilet would have to come out for a couple of days on Monday (what THIS Monday coming? Yes, we’re starting next week. GULP!) and worst case scenario it’ll go back on Thursday at the latest. That meant both of us using the by now hated commode, tipping it into a bucket and getting the builders to lift the inspection hatch night and morning for me to sort it out,
lovely thought!
As it happened, the job took longer than we thought and
the loo didn’t come out until the following Monday, with only one night spent without it. The builder, who was a little gem, left it until the last possible minute before removing it, and each night after that left us a temporary toilet, flushed with a bucket, but useable, which wasn’t as bad as the nightmare we’d both dreaded. Also, the bathroom door had been removed and the opening widened, and with the aid of a couple of boards, Chris could actually get in and use it.
The internal work was completed on Friday 21st December, resulting in a beautiful wetroom we could both use, and the best Christmas present ever, the hated commode’s final redundancy. It’ll go back to Pine Cottage as soon as I can arrange it. External works were completed on Friday January 4th, except for a gully that needs tarmacing but that is down to the council, not Cookes. (This to has now been done since writing this report)
I have to say, the builder who did most of the work, apart from electrics and gas, went out of his way to make life as easy as
possible for us during the disruption, was very conscientious, worked damn hard and didn’t cut corners. He was more than helpful and I would recommend him to anyone. I’m over the moon.
So, for anyone about to enter the world of Disabled Facilities Grants, here’s what you do. Phone your local council and ask them for a self-assessment form. Once that has been returned they will eventually have social services get in touch with you. If you are the property owner, then no permission is needed, but if you are renting privately, you still deal with all arrangements, though the company overseeing the works will gain permission from your landlord. Don’t bother trying to keep all options open, Social services will want a definite decision there and then and work only on that decision. There are no alternatives, it’s this way or that way, or the case is closed. It’ll take up to a year from your first application via Social Services to completion of works, so be patient. Cutbacks mean there is less staff both at the councils and Social Services to deal with claims nowadays, which means it takes longer. It’s not good enough, but it’s what we’ve got, but the end result is worth the wait. It does mean you are committed to living in the property for a minimum of five years, or you could be paying back the grant, but that’s no price to pay for us, we like it here, even if it is a bit small, and we have the smartest wetroom in the block now. It even looks less scruffy from the outside with smart new steps and the new concrete ramp, with the bank having been shaped to fit it.
The works have now been signed off, and although there is
no handrail, these works were done to suit Chris’s current condition, i.e., a wheelchair user. Should he feel he needs a handrail in the future, once he gets his prosthetic sorted out and more useable, then we simply contact Social Services again and open a new case, and apply for a further DFG to finance a new handrail. One of the reasons they don’t put one on every time is that it makes it obvious that the ramp is for a disabled person thus making the property, and the person inside, more vulnerable to possible criminal activity, so it is often a preferred option to omit a handrail unless absolutely necessary.
This is how it is in Norfolk. Other areas may have slightly different procedures, and may take less or more time to complete. Check for details of Disabled Facilities Grants on your local Council website, or speak to someone there and you’ll be guided in the right
direction.