Sometimes getting the equipment we need to be able to live our lives as independently as possible is difficult. If you are purchasing it yourself, you need to ensure that you are getting the right "thing", that it will do what you want and that you are getting value for money - it's not cheap being disabled. Even when Occupational Therapists, or Social Services are involved in purchasing equipment, it is often a long drawn out affair, with delays, quibbles over budgets, and then the wrong thing being delivered.
With the current austerity measures and the cut backs in local authority budgets, obtaining equipment through your local Social Services is going to become more and more difficult. However, some of these problems with equipment go back well before this current economic crisis, and are more of an indication, to my mind anyway, of how Social Services fail people, and in some cases how the staff simply aren't up to the job.
Back in 2002, I spent 6 weeks in hospital, in the Royal Free Hospital in north London. I had been very ill, spending 5 days in intensive care, and had a quite a hard recovery, involving lots of physiotherapy, and getting me back walking using sticks.
Towards the end of my stay, the doctors and nurses, wanted to ensure that I had certain pieces of equipment at home, so that I would be OK when I got there. In order to make sure this was in place they needed to discuss my needs with my local Occupational Therapists, in my borough in Croydon, south London.
However the local OT's would not supply equipment until I was home and they could assess my needs. The hospital staff pointed out that it wasn't safe for me to go home, without the equipment being in place first, and that they wouldn't discharge me until they knew the equipment was there.
So for about a week we had this stalemate. The doctors wouldn't discharge me until the equipment was in place, and local Social Services wouldn't supply the equipment until they could assess me at home, but I couldn't go home because I needed equipment in place first.
Eventually, out of frustration, I asked the doctors for a list of what was require - raised toilet seat, a rail to go round the toilet, grab rails, bed lever, etc - nothing unusual, all fairly basic things. I gave the list to my Mum, along with my credit card, and she went to a local equipment supplier and purchased it.
Having bought the equipment myself, and assured the doctors that it was all in place, they discharged me, with an assurance that the local Social Services would visit to assess my needs, urgently, as soon as I was home.
Ten days later, one of the OT's from Social Services came out to assess me. She went round and looked at all the equipment that I had purchased and said, "We could have supplied that." In the end she advised that I had all the equipment I needed but that they could have supplied this. I pointed out the fact that they wouldn't supply the equipment before I left hospital and she advised that this was there normal practice, even if someone needs equipment before they can be discharged. I asked her if 10 days constituted an urgent assessment, to which her response was it was as soon as they could do it, and anyway I had all the equipment I needed so it wasn't a problem. I then presented her with the invoices for the equipment, but she stated that they could re-imburse me for things I had purchased myself as they could have supplied these from their stores.
At this point I almost blew a gasket.
This lady is now the senior manager responsible for Adult Social Services in the local borough!
Shortly after this a new OT, called Sue Horner, took over my file. Sue was very good, and usually did things and got equipment quickly and efficiently. If she didn't do something, she wouldn't fob me off with some lame excuse, she'd put her hands up and say she'd forgotten, and then get straight on it.
When I was in Rehab, in 2008, there were certain adaptations I needed done at home, so that the property was accessible to me in a wheelchair - a ramp, changing the kitchen access and layout. In order to start the ball rolling, Sue put me in touch with someone from the Major Adaptation Unit.
This lady came and visiting me in the Rehab centre, and I filled out forms for a financial assessment, to see who would pay for the work. We also discussed in outline terms what work was required.
A couple of days later, she rang me to say that the financial assessment was all OK and that Social Services would pay for everything. I was surprised by this but wasn't going to argue.
We agreed to meet at home, on one of my trips home from Rehab where the centres OT's and Sue meet to look at my equipment needs. At this meeting we looked at what might be required in terms of a ramp, and also with regards to the kitchen. The more we discussed it, the less I liked what was being proposed. It was obvious that I was going to have very little say in the work that was going to be done, and the timescale for completing the work could be anything up to 2 years.
Anyway, after further discussions, I was asked to complete another financial assessment. I gave them exactly the same details, but this time I was told I'd have to pay for everything. I queried why, when I had given the same information as before. If the rules had changed for granting financial assistance, which they hadn't. I couldn't get an adequate response.
I ended up paying for all the adaptations and got what I wanted done, in a reasonable timescale. In fact I got a better quality and better equipped kitchen than I would ever have got from Social Services. I could control when, who and how the work was done, and ensure it was done to a high standard.
Within 3 months of leaving Rehab all the adaptations were complete, rather than the 2 years it could have taken with Social Services doing it.
Sometimes, I get the feeling with Social Services that they promise you something that you need, and then take a long time in supplying it. Being cynical, I think they sometimes do this deliberately, so that you get sick of waiting and go and get it yourself.
During a period when Sue was off ill, her manager took over getting a piece of equipment for me - I can't remember what. After waiting and waiting, and numerous phone calls chasing her up, I finally got hold of her. I expressed my annoyance at the amount of time things were taking, and went onto say that I did not think that she was actually doing anything to get the equipment, and if that was the case couldn't she pass my file to someone else to handle. She agreed, quite matter-of-factly, that she wasn't doing anything on getting my equipment, as she was to busy.
Fortunately by this time Sue was back at work and my file went back to her.
However the worst case of delay on a piece of equipment was regarding a replacement seat for my commode/shower chair. For those of you unfamiliar with these, there is a cushioned seat to these chairs which is detachable, and the material had started to split. This could rub on my bottom when I sat on it, making my bottom sore. It is also important that the seat is of a certain height to ensure that it is level when I come to do transfers to and from my bed/wheelchair/armchair.
I kept a log of what happened, so know exact dates.
26th October 2011 - Rang Sue to advise that the seat needs changing as the material is splitting.
31st October 2011 - Sue rang to arrange to come out and measure the seat.
1st November 2011 - Sue visits and measures the seat.
10th November 2011 - Sue brought a new seat. This is higher that the original, which will make my transfers more difficult. Sue will arrange to have a new seat made at the correct height.
9th January 2012 - Sue rang to say that the company who will make the new seat need to come out and measure the seat to ensure they get it right. Sue also advised that she is retiring and my file is going to be passed to some else - she doesn't know who.
29th February 2012 - Tana Ellis rang to say she has taken over my file and wants to come out and visit me.
7th March 2012 - Tana rang to advise she can't come as advised but made a new date.
12th March 2012 - Tana visited. She obviously hadn't read my file before coming as we needed to go over everything again. She found the quote for the new seat on the file and advised that this needed to be submitted for approval of the funds.
1st May 2012 - I rang Tana and left a message for her to ring me to let me know what was happening.
1st May 2012 - Tana rang back and advised that the quote was being submitted for approval tomorrow. Could not, or would not, say why it wasn't done sooner.
4th May 2012 - Tana rang to say quote not signed off but thinks it was an oversight and she will discuss with her manager next week.
11th June 2012 - Tana rang to say quote for seat has been approved and order being put in.
26th July 2012 - I rang Tana to find out what is happening with the seat.
26th July 2012 - Mandy from EuroMobility - who are making the seat - rang and advised that they have outstanding queries regarding the seat but cannot get the necessary answers from Social Services. I gave her the necessary dimensions and she agreed to get the seat made up ASAP and this should be in the Croydon Social Services store in 2-3 weeks.
16th August 2012 - Tana rang to advise that the seat is now in stores and will be delivered next week. She is away until beginning of September.
5th September 2012 - Rang Tana and advised seat has not been delivered.
5th September 2012 - Stores rang and they will deliver seat tomorrow.
6th September 2012 - Seat delivered.
6th September 2012 - Tana rang to arrange to come out to see seat.
10th September 2012 - Advised Tana that new seat is too soft which makes moving difficult and that it is uncomfortable to sit on - actually so soft that I was sitting on the base of the seat. She advised that she will need to get the company rep to come and have a look at the seat. In the meantime I requested that the old seat be returned to me or else my bottom will become sore. Tana advised that she is not now in the office until 13/09, and I asked if there was no one else who could deal with getting a replacement seat to me. Expressed my annoyance with the length of time this was all taking.
10th September 2012 - Tana rang to advise temporary replacement seat has been ordered and should be delivered tomorrow.
11th September 2012 - Temporary seat delivered.
12th September 2012 - Tana rang to check seat delivered and to arrange for company rep to come out.
18th September 2012 - Tana rang with date for company rep to come out.
26th September 2012 - Tana rang and advised she cannot make arranged date but her manager, Jennifer, will come in her place.
2nd October 2012 - Rep came and looked at seat and said it was too soft. She has taken replacement seat away and will get a seat of those dimensions made but with a harder cushion, which she said it should have. Jennifer came in at end of conversation and agreed to rep going ahead and making the replacement.
16th October 2012 - Tana rang and advised that the company no longer makes hard foam seats. Their solution is that they provide a lower seat frame and then the thicker seat will be at the same height. She will arrange for Wendy from the company to come out and discuss. Gave Tana dates when I won't be about.
5th November 2012 - Rep and Tana came. They took away the original seat and will get one made at that height and density of foam.
11th December 2012 - Rang Tana to find out current position. She only got the quote on 5/12 and will be put to panel tomorrow to be signed off.
12th February 2013 - Rang and left message for Tana to call
18th February 2013 - Tana rang and will chase up what is happening with the seat.
21st February 2013 - Tana rang and advised that the seat is now in stores and she will arrange to get delivered.
26th February 2013 - Stores rang and seat will be delivered tomorrow
27th February 2013 - Seat delivered.
27th February 2013 - Seat is to high. Tana is away so rang stores and asked if they could return previous seat.
28th February 2013 - Sue at stores rang back and is still trying to find seat and has asked driver to look for them when he returns. She will call back.
28th February 2013 - Sue at stores rand and replacement seat will be delivered tomorrow.
1st March 2013 - Driver delivered back a replacement seat. This is different from the one he took the other day. The original seat, with the split cover was 22.25 inches from the floor to the top of the cushion. The custom made cushion was 22.75 inches from the floor to the top of the cushion. This is over half an inch higher. The replacement cushion just brought back is 22.5 inches from the floor to the top of the cushion, and the foam is hard as I require. I will test over the weekend to see if it is OK before discussing with Tana.
4th March 2013 - Rang Tana and advised that I now have a cushion that is OK. But that this had come straight out of stores, and wasn't custom made. She will come out and look at new cushion.
There may have been some other calls chasing for updates on what was going on which I didn't record.
Eventually about 3 weeks after this Tana came out and looked at the new cushion. She couldn't give me any explanation why there was an acceptable cushion in stores, that could have saved us all this time and aggravation. I expressed my annoyance at the time this had all taken, to supply what is after all a fairly basic piece of equipment. Rather than apologise she just went to to say it wasn't her fault and she'd done everything she could to get me the right cushion. When I asked if 18 months was an acceptable timescale for delivering a shower seat cushion, she just repeated that it wasn't her fault.
About 4 weeks after Tana's visit, the old seats were finally picked up and taken away.
What is really troubling about this is that a replacement seat for a commode/shower chair is a standard piece of equipment but still took so long for them to get it right. There seemed to be a complete lack of concern to get this right by Social Services, or the company who were supposedly custom making the cushion.
I can chase these things, I can fight my own corner, but what about the people that can't, or haven't got someone who can chase these things up for them. Do they just have to accept what they get.
I've written and complained, but so far I've not even had an acknowledgement. Why am I not surprised!
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