Monday, August 31, 2009

Social Care

Since they opened up the Health Insurance market here, which they called liberalising the market, this has meant that a public service has been re-designated as a profit making enterprise and the franchiches were up for grabs.

The health insurance has gone up considerably in price and has been cut back even more considerably.

Up to 2005 the basic cost per month was aprox. 30 guilders, for which you got good care, also regular dental checks by the dentist.

And then they turned public companies into private companies and opened up the market and health became a commodity and now we pay 250 Euros each per month and get less than we did previously.

Plus everyone has to pay 150 up front at the beginning of the year.

It is also very frustrating here, a new law the WMO came into force in 2007, up to then local council carried out the governments guidelines which was organised and administrated centrally from The Hague.

Now the new law which administers the provisions for the sick and handicapped is administered locally and has variations depending on location.

Each city and town has the right to specify what they will provide; in Haarlem it is easy to get a hand bike attachment for the wheelchair, but not in Amsterdam.

I applied for one in 2007, on the advice of the ergo therapist by the RCA, after several months where it seemed the outcome would be good; I finally got word that I had lost.

But had I really lost as instead of a nothing I was a going to get the Speedy, the electric scooter as soon as I handed in my scooter.

This was great news as I could not use the scooter as I could no longer walk at all b y the time I was given the scooter.

Had I been given it right away when I needed it I could have had 6 months use of it, as it was it went to the RCA with me when I became an in patient and the scooter sat in the hall and was only used once when I had a test drive in the park.

The WMO is a frustrating law, while the law states what you have a right to mobility aids, what you actually get is a different thing altogether, as it is up to the individual councils.

Sadly it is run on a cost cutting model, so they do not look for the best for you and your situation, instead they will look for something that gives the minimum and is cheap.

This is not a good way to run a support service, it results in strange rules, and for example I had some facts to back up my appeal against the hand bike decision.

I pointed out to them the health benefits of being able to effienctly move yourself around in the wheelchair with a manual hand bike attachment.

I was informed that medical reasons were not grounds for appeal, that they looked at it purely on administrative reasons and I had none so my appeal was dismissed.

At the RCA I also noticed that week after week people were being given the same type of wheelchair, seems one size fitted all.

Obviously they had bought in bulk and were giving them to everyone who needed a wheelchair, even
Though they were big, clumsy and heavy.

Spoke to two people, she unhappy in a chair too heavy for her to move independently in; he with heart problems and asthma had to push her, he had to sit every few meters, which is not possible everywhere in Amsterdam.

Or there would be huge delays getting replacement bits for a wheelchair, met one man at the RCA, who needed new wheel guards so he did not get splattered every time it rained, he had been waiting for a year.

He had many appointments with an advisor from Welzorg and each time the wheel guard was not ok, it would generally not be the right size, eventually a year later he was the proud recipient of a set of cheap plastic wheel guards that kept him dry.

In Amsterdam it is difficult to get about in a wheelchair, the accessibility law means all premises open to the public like shops and cafes and restaurants are accessible.

Here you can still see new premises that have big thresholds and so no way you can get inside without a lot of effort and assistance.

The City Council should refuse shops and other business their operating licence until their premises are accessible to all.

The City Council bought new trams; they spent millions, just before the new law on accessibility came in here in Europe.

The trams do not facilitate smooth access, instead the conductor has to bring out a two small metal ramps and try to get it set up so the prospective wheelchair passenger can roll on.

Sadly the tram stops do not provide enough room for this manoeuvre and tram conductors were endangering their health trying to lift people sideways onto the ramp.

That means that trams are not accessible and if you do manage to get in there is a small space which you share with bicycles and prams.

The Government has done similar with he trains, buying trains that are inaccessible without the assistance of the train conductor.

You have to phone and book in advance inclusive of your return journey and station you will arrive and leave from.

The trains should be accessible now but somehow they have managed to wriggle out of conforming to the law, until they can buy new rolling stock, think aprox. in 2020.

I have noticed that there are alot of incompetent people out there masquerading as people who care and they are frittering away money that was earmarked for mobility aids and adapted housing.

Shame that the people that are good and do put your interests first are not those involved in advising the Council as to what you need.

They are using their skills to help and support people who are vulnerable because of sickness and progressive diseases.

They are the jewels you meet as you progress through the labyrinth that is Social Care.

Sunday, August 30, 2009

Enjoying today.

Taking it very easy today, had a strange night where I seemed to fall asleep right away only to find myself listening to the music and realise that I am awake again.

It’s an odd feeling,like getting somewhere and finding you should be somewhere else altogether.

I am trying to regain my balance again after the news that it will be almost two months before the adapted chair will be ready.

By then I shall be screaming to go outside, have been hoping for his moment since end of January when Ton was so optimistic that the wound would be healed very quickly.

Then we thought I could be up and about for my birthday on 17 March, sadly I was in bed, but kept the dream alive of getting out there.

Enjoying the summer, going to the park with Richie and the dogs, but each moth has come and gone and I am still here.

Have done my very best to stay positive and still am but it is hard especially as I am noticing how much more pain and discomfort I have these days.

It is because my muscles are getting very sloppy, they are not being used, and no wonder Richie is constantly adjusting my position in the bed.

Right now I have concertinaed and am sitting very strangely, my body is zig zagged, gone cork screw shape.

Hanging to both sides and my neck is getting the brunt of the pressure.

Back in a moment once Richie has helped me regain my equilibrium, he did so by just adjusting me so my spine is straighter now.

All it took was a small movement to get me sitting better, mind you now the laptop does not see to be right in front of me.

Still it is better than just now, have cricket commentary on the internet radio; it is the cricket commentary from 5 Live.

Had an intimation of what it must be like to be contemplating work tomorrow, should not go there but really have been noticing that I would so love to be back at work.

Blimey, to think that when I was still working I sometimes felt abit hard done by, now I look back and smile at my foolishness of feeling hard done by then when compared to now it was paradise.

Things can be worse and here it is they are worse and still I am cheerful and optimistic and looking for the good things to enjoy.

Would not have thought it possible for me, had I been told this a few years ago, but yes there is life after a progressively disabling disease.

Today has been very changeable, blazing sunshine and then huge quantities of big fluffy clouds and then blue skies and sunshine.

The theatre across the road has been hired out for a birthday party, Richie saw the band arriving and said he has seen people leaving with plates of tasty looking food.

It sounds very pleasant over the road at the party, with everyone singing Happy Birthday and all the kids joining in vigorously.

Lovely happy sounds which is nice for a warm and relaxed Sunday, hope Richie brings me a bag of THC soon as I am having quite a lot of pain.

Ok here comes a bag of THC vapour for me to inhale then it is pills and shortly after a long session in the shower, hair cutting time and fingers and toenail cutting.

A traditional Sunday getting ready for the week to come.

Tomorrow I am determined to get the last bit of paperwork sorted and sent off so the log jam will be cleared and life can become even more relaxed.

For now I will enjoy Richie playing the banjo in the front room and the kids playing outside and the sun shining so prettily.

Saturday, August 29, 2009

Sharing the pie.

I have been in bed now 24/7 until a pressure sore that developed last year has healed.

It as a result of not getting a wheelchair in my size,that gave me the support that I needed.

The wheelchair was not in my size, the seat is 10 cm’s too long and approximately 7 c m’s too wide.

This resulted in a very deep and wide pressure sore which has taken over a year to heal, all the time I have not been able to sit so have been half lying half sitting in bed.

Had thought that seeing as there were some serious mistakes made when I was given the electric wheelchair, that things would be speeded up.

Really thought that this is what I was told, so was really disappointed when I was told that it would take longer than I had hoped.

Really hoped for September so I could finally get out of here and live a little, instead I have to wait until October.

Determined to stay calm and cool about having to wait until October before I will get my electric wheelchair well adapted.

I guess if it means that the wheelchair will be well adapted, it will be worth it, as I need to know that I will be sitting well supported.

This is what I need now more than ever after having to spend over a year in bed in order for the huge pressure sore wound to heal.

It has been a hell of a long time healing, but it is healing and doing so very well as it has also healed by filling up well from the inside.

Sitting well supported is a pre-requisite for sitting for me, anything else would be asking for an immediate repeat of this last year.

This is well know to my consultant, Michelle, but did not stop her telling me that it was my own fault for having a two month procedure.

As it had been my own choice to go with Summit as opposed to Carolien, from Welzorg, if I had chosen Carolien I could already have had my chair adapted.

She knows that Carolien was not a real option as her method is too hit and misses, especially as last year she had not been able to give me the support that I needed.

This year I need even more support and it is not easy to see exactly what sort of support I need and where.

Summit’s vacuum mould is a far better method than putting me in and out of the chair as Carolien tries to modulate the back rest to give me the support that I need.

Both Michelle and Carolien said that Summit was the only option for me seeing as my need for support was greater this year than last year.

That is because the muscles in my back and sides have been inactive for a year and have become flaccid and can not keep me as upright as I need to be.

So seeing as they too chose for Summit, it is strange to be blamed for the slowness of the burocracy involved..

It is also strange that Welzorg have to be involved, so they get their share of the pie, as they do not actually do anything but say it is ok to do it to Summit.

Basically they behave like a contractor hiring a sub contractor.

Funny really that of the three people involved only one actually does something and that is the man from Summit, Elwyn.

The other two Harm, Welzorg and Michelle, ARCA do nothing but nod their heads and put the hours on their time sheets.

We were wondering how much a consultant therapist and a consultant engineer get for their consultation on the adaption of my wheelchair.

I bet it is a nice sum of money indeed; hence they want to try to have as many meetings as possible.

That is the reason the second meeting can not take place until Michelle is back from holiday, as she has to be there.

Even though she will do nothing whatsoever to contribute to the appointment apart from her presence, we still can not go ahead without her.

Can’t see why, now she has introduced us to Elwyn he can not crack on and make the mould and fine tune it and it could all be more or less ready by the time she is back from holiday and then Michelle could check it very thoroughly.

And the paperwork could be passed to the Amsterdam City Council for rubber stamping and getting paid.

Things could happen faster and more people could be assisted in getting the aids they really needed.

This however does not happen what happens is the slow burocratic procedure we are now stuck in where all the middle men and women get their share and then sometime, the client finally may get the mobility aid they need.

This is what I have observed in the three years since my diagnosis, at first I was pretty incredulous.

Could not believe there was such a two tier system and there were so many people employed to assist handicapped people who seemed to have no empathy and some no interest in their clients.

Have been mercilessly patronised, shouted at and verbally attacked, have been physically neglected, one carer caused the skin to peel off my ankles.

Others could not use the hoist and could not seem to learn, they caused me any amount of pain, painful spasms and quite abit of worry too.

Others just did not turn uyp, one abaondoned me twice in one day, leaving me to piss in the wheelchair.

They, the carers that came here daily also managed to break a lot of things, mostly favourite cups and plates.

But by far the worse for terrible attitude have been some suppliers like Revacore, who delivered the mobile shower chairs; one was useless, it took three months to get one that I could use.

Their helpdesk were incredibly rude and hostile when I phoned to explain that I could not use their very clumsy, heavy and much too large wheelchair shower chair.

And United Care who provided the passive lift, which gave us 7 months of pain, fear and worry before we were finally listened to by ARCA and got another safe and better hoist.

We eventually got a good lift from a company called Handimove, the first time we had been treated well by a company supplying mobility aids.

Welzorg treated me badly and like a problem person, ever since I had the audacity to ask to postpone an appointment until I had my first appointment at the RCA, the Rehabilitation Clinic, Amsterdam.

My thinking was that the doctors and therapists might have good advice to give me about the sort of wheelchair that I would need.

This was not well received by the Welzorg employee who phoned to give me an appointment; she told me she was not sure that I would get another appointment before cutting the connection.

Ever since every Welzorg employee from sales staff to delivery staff has all approached us with sneering condescending attitudes.

In ARCA and Welzorg, there seems to be an almost institutional antipathy towards their clients, the same attitude exists in the other Council advisors the CIZ, who recommend that people get re-housed according to their needs.

Their first advice in the summer of 2006 was to give me the right to apply for ground floor apartments.

These were not places accessible to a handicapped person and had none of the features that I needed.

Finally the RCA got my paper work corrected and I was now able to apply for adapted apartments.

The woman from the CIZ knew that I had Primary Progressive MS and I could not no longer manage the steps alone, she knew too that the progression could be rapid.

My case manager from ARCA, also knew that my MS was progressing rapidly, she had the task of getting a shower chair fitted in our bath room along with handy grab rails and hand holds.

She was asked to provide them quickly in November 2006 and it was done at the end of February 2007 when I could no longer shower independently.

Sadly there is no fast tracking for progressive diseases for accommodation and mobility aids as there should be, so I have consistently not had what I needed when I needed it.

This system needs to be changed to be able to respond swiftly to the needs of people with progressive diseases.

It should not be run purely as a cost cutting exercise as it is presently run, cost cutting meant that my electric wheelchair was not customised for me and therefore did not give me the vital support I needed to avoid pressure sores.

This cost cutting resulted in denying me the ability to go out and socialise and be a part of where I live.

I hope that in mid October when I get the adapted chair I will finally be able to go outside and once again feel part of this vibrant neighbourhood.

Friday, August 28, 2009

Have to be patient.

The appointment was all talking and sadly none of the actions such as I had hoped and thought would happen.

Instead, I was told at length all about the procedure that I already knew, except it took an hour interspersed with a couple of calls that Michelle got rid of by saying she was in a meeting with a client.

During the hour I was told how how the project would progress, seems Michelle is on holiday for two weeks she will be back on 14 September and the second appointment is on 17 September.

At this appointment someone from Welzorg will be present, this is because they are the official supplier who work together with Summit.

In order to get the go ahead we have to go through this procedure and involve Welzorg
to get the Amsterdam City Council’s approval.

It was very frustrating to find out yesterday,that all that would happen was talking, when what I wanted was for things to be rushed through.

Had thought that my situation would be taking into account and the whole process would be speeded up.

Sadly it seems that this is not going to happen.

On the 17 September Harm from Welzorg and Michelle from ARCA and Elwyn from Summit will be here,

The first 45 minutes will be them discussing what will be done technically to the chair, I asked if they could not do this up at the Rehab Clinic but it could not as they needed my w/chair.

Elwyn will measure my electric wheelchair, in the next hour Elwyn will also measure me and he plans to bring their chair with the bag attachment.

He wants to take the first step of registering my body imprint in the bag attachment, I get placed on the chair and air gets blown into the bag that fills up around me and moulds itself to my body..

The imprint of my body is registered and I am removed and replaced in the bed.

After this meeting, Elwyn has to put in an estimate of how much the job will cost and why it is needed.

As soon as Amsterdam City Council give the go ahead, Elwyn will make the mould which will be used to make the back rest and the seat.

He thinks doing the first step on the 17 September will give us abit of a head start when the all clear comes through from the City Council.

Then there are 1 maybe 2 more appointments with Elwyn for fine tuning and then I will have the adapted electric wheelchair.

This really sounds like it will realistically be October before I will get the custom made seating, shame as the street party is in September.

Was hoping to be there too, as that is the last chance this year of enjoying an neighbourhood street party.

I guess my next big chance to meet my neighbours will be at the Christmas drink at the Fijnhout theatre across the road.

After the meeting I was so very disappointed, really was especially as I had thought that I had been told everything would be done to speed things up.

So that I would not have to spend a moment longer than I needed in bed and now it seems that I will have to wait until mid October.

So there it is burocracy got me into bed with the pressure sore as a result of cost cutting and not making the wheelchair to fit my measurements and is now keeping me in bed an extra 2 months because procedure must be followed.

My response will be to try to keep as calm as possible and to look forward to getting out to see and enjoy this beautiful city that I live in.

Things could be worse and may even get better soon as I can sit again.