Update on the Respite Saga

Head Meets Brick Wall

It’s been a long time since I wrote an update in the Respite Saga. The problems continue, with the addition of brainless staff at the helm, upholding pointless rules.

The local MP was little or no help to me whatsoever. After the helpful MP we had previously I foolishly concluded that all MP’s would want to care for their own constituents. In reality the only thing he did was to forward my letter on to the Chairman of the local NHS Trust and Patricia Hewitt, the then Minister of Health.

Of course Patricia was far too important and busy to look into the matter and respond to my letter, so she then forwarded my complaints on to someone else. Someone else, like most politicians I suspect, was caught up in her own fantasy world of statistics and figures and wrote me a long letter to explain how many millions of pounds our wonderful government had invested in mental health services – which didn’t actually address the problem of the cut backs in our area which I was referring to.

It was April last year when I sent my second letter of complaint to the Chairman of our local NHS Trust, regarding the cutbacks in respite beds. It took the Chairman four months to reply. In part he wrote:

“Although in the past [the respite home] provided respite on a limited basis our strategy in the future will be to provide a wider and, I hope, more convenient range of respite opportunities such as direct payments for home support, holiday respite and respite relief from home in other settings similar to [the respite home]. Until these arrangements are in place [the respite home] will continue its current arrangements.”

In other words “Stop writing to me because it will make no difference whatsoever – the changes will stay as they are”. What of these “other arrangements”? It appears to me that care services are being reduced in favour of direct payments, knowing that many people, including us, won’t even qualify. Those who do qualify are so ill that they could clearly do with both services. Alas, when you’re dealing with the NHS it’s one or the other – or neither – not both. I have no idea what “holiday respite” is – unless the government are planning on paying for holidays for everyone (yeah right), and “respite relief from home in other settings similar to [the respite home which we have just reduced the number of respite beds in] – what exactly is the point of that? Why would they open up another home similar to the one they have just “reconfigured” services in? Are these simply more lies designed to pacify me?

Not long after receiving this letter I became more depressed, although it took me a little while to recognise it. But we still had our three breaks a year, right?

Several things happened at the respite home over the following months, which provided varying degrees of irritation, but as usual, nothing to actually endear the staff to me. There were the stupid rules which prevented respite for Mr Man being booked by anyone other than his key worker, who of course wasn’t there, despite the fact that they all have access to the same diary for the same bed. Then of course there was the day when Mr Man was left caring for the emotional needs of a lady who was staying at the home as a form of “crisis intervention”, because the staff who were intervening in her moments of crisis didn’t actually notice that she was upset, or didn’t care. And of course there was the wasteful booking by staff members of the respite bed for Mr Man on a night he wasn’t even going to be there, because they insist on booking Monday to Friday / Friday to Monday, even if the person won't be staying for that full length of time, which left me wondering if the staff actually realise that they are there to provide a service, or do they believe that this home remains open simply to provide them all with employment?

Nothing could have quite prepared me for what happened when I called to book our third break for 2007 and a couple of breaks for 2008 though. Following my bout of depression, it was December before I felt able to face the thought of going away from home and trying to be happy, let alone dealing with those people at the respite home. I never look forward to calling and speaking to Jim, and actually it was Mr Man who kept prompting me to ring this time. When I did, I suppose I shouldn’t have been surprised to learn that the bed was fully booked for the rest of the month, and naturally the home was closed over Christmas and New Year, because no one needs respite or rehabilitation at that time of year do they? The bed was already booked by someone else for the dates we wanted in March, and due to the stupid “Monday to Friday / Friday to Monday” rule with the booking of the bed we couldn’t have the dates we wanted in July either. So I'd called to book three breaks, and couldn't book any of them. It seemed like a bit of a pointless service really. Probably to try to calm me down, Jim came up with the suggestion of booking a break in early January, and he said that would still count as one of our 2007 breaks. He seemed pretty sure of this – until I asked for confirmation in writing. It’s a good job I did really because once he had checked with his ever-so-helpful manager it became apparent that respite breaks cannot be carried over from one year to the next, even if it is booked early in January because the rest of the previous year is fully booked.

Hang on a minute, I thought the ever-so-helpful manager had told me what a flexible service this was, and that actually, I could possibly have more than three breaks a year if I wanted to because they would rather see the bed in use than go empty (which is obviously why they booked the bed for Mr Man for an additional night in October, knowing that he wouldn’t be there) and all I had to do was ask? Well now I’m asking, and we’re not even allowed our third break, let alone any extra. How flexible is that?

Once I had received the letter explaining this, I called Jim to cancel the break in January and to tell him what a liar his manager is. All he could say was “I’m sorry you feel that way”. Yes, I do. After all of my fighting last year with the Chairman, I actually felt that the manager was on our side, when in reality she was also lying to pacify me, only she was better at it than the Chairman.

These lies have left me feeling so angry that I’ve wanted to kill people. I can’t bear the thought of going to that place or speaking to anyone from there ever again. Several people have tried to help sort out the problem with the July booking by speaking to the manager at the respite home, including Mr Mans Care Co-ordinator, and the Carer Support Worker, but it’s pointless. She won’t even budge on such a small issue by allowing me to book Thursday to Sunday instead of Friday to Monday. Mr Mans Psychiatrist has said that she will now call the respite home, but I’m not holding my breath.

I haven’t replied to our good friend the Chairman. I haven’t had the emotional strength to do so. There are only so many times one can bang their head on a wall before it causes serious injury. Interestingly Jim claimed that other respite users appear happy with the arrangements. How does he know that? How does he know if these people are happy or if they simply do not have the strength to go through a pointless complaints procedure as I have?


Edit: I have now been informed that the bed has been booked by someone else for the Thursday in July, but of course I have no way of knowing if the person actually intends on staying on the Thursday night, or if the staff have just booked it anyway like they do with Mr Man. So there is a possibility that this bed that we need will remain empty on that night. Now you see why I get so angry when they insist on booking Mr Man in from Friday to Monday when they know full well that he will be going home on the Sunday morning.