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.

Respite

Dictionary definitions of the word Respite:

• to relieve temporarily, esp. from anything distressing or trying; give an interval of relief from
• a usually short interval of rest or relief
• a (temporary) relief from harm or discomfort

Respite comes from Old French respit, from Latin respectus, “a refuge, a retreat”


Mr Man went into his respite home again recently. It’s one of those necessary evils that both of us hate. If I’m going away somewhere Mr Man can’t cope with either coming with me or staying at home, and so he needs to go into “respite” accommodation. I know I’ve complained earlier in the year that there are not enough respite beds, but that doesn’t mean that we like using them!

The day that Mr Man goes in is always a stressful one, and we tend to leave everything to the last minute; pointlessly trying to delay the inevitable. I feel so cruel dropping Mr Man off there when I know that he hates it there so much. He feels insecure being away from the familiar surroundings of our own home, but we both know he won’t cope being on his own. At least when he goes into the respite home he always stays in the same room, which helps to give him that sense of familiarity that he needs. Also, I worry about how he will cope while I’m away. I don’t trust the staff to notice if his symptoms worsen.

"Respite" by Philippa King

We both tend to avoid contact with the people who work there as much as possible. They’re pleasant but clueless, and so laid back that they’re almost levitating in a horizontal position. It’s frustrating to say the least. The presence of one member of staff in particular makes Mr Man feel extremely uncomfortable as he used to be his manager when he worked for Royal Mail, and they didn’t get along at all. Neither of them has brought up their past relationship, and they’re pleasant to each other, but it’s very awkward.

Mr Man tends to just stay in his own room most of the time. He takes his laptop with him and connects to the internet using his mobile phone as a modem, and he also has a little gadget that he takes with him that he can watch all his favourite films on.

He did spend some time in the living room this time though, comforting a woman who was also a “guest” there. Now bear in mind that there is only one respite bed and Mr Man was in it, so this lady has either just been discharged from hospital and her stay there is part of her rehabilitation into society, or she is staying there as a form of “crisis intervention” – in other words her mental health is deteriorating and she is not coping at home, so they move her to this home in the hope that they can stabilize her before she deteriorates further and needs a hospital admission - after all, prevention is better than cure, and rehabilitation homes with unqualified staff are cheaper to run than psychiatric wards which require proper nurses. Bearing that in mind, I’m not quite sure how this “crisis intervention” thing is supposed to work; the staff have no say over medication or any other form of treatment or therapy. In all honesty they appear to be nothing more than baby sitters.

When Mr Man first stayed in this home I was quite impressed with the relaxed atmosphere and the fact that the staff room door was always open. Rather than making themselves unapproachable by hiding away in the office for their gossip and tea, the staff have an open door policy whereby guests can just walk in to the office at any time of the day or night for a chat. This is so different from the hospital that Mr Man was in where patients were treated like naughty school children, left queuing outside the office door, and were not allowed out of their rooms after a certain time.

However, going back to the lady that Mr Man was comforting, what she needed was more pro-active care rather than re-active*. As she struggled to hold back tears she explained to Mr Man that she felt too shy to just walk into the office and announce “I need to talk to someone”. Once again I suppose it comes down to the age old problem of these staff members not being psychic; they can’t offer help unless they know it’s needed. But surely discernment would be a good quality to possess for a job like this?

To be honest I’m not sure what qualities or qualifications are looked for when these people are employed. I mentioned previously how Mr Mans Key worker, Jim, unhelpfully tried to offer me various dates for Mr Man to stay as a substitute for the actual dates I needed – not very helpful when you have a hospital appointment for an operation on a specific day. He has also rather tactlessly suggested to Mr Man that he should stay more often to give me a break at home, as if Mr Man is a burden to me. If it didn’t make me so angry it would be laughable considering the cutbacks in respite accommodation. How could he possibly stay more often?

This time when I booked the dates for respite Jim booked Mr Man in for the Sunday night “just in case”, in addition to the Friday and Saturday I had asked for, despite the fact that I had already told him that Mr Man would be picked up by his sister on the Sunday morning. I couldn’t be bothered to argue with him. The less time spent in conversation with him the better. When I dropped Mr Man off I made sure that the staff were aware that Mr Man would not need the bed on Sunday night, but they left him booked in saying “It doesn’t matter”. Well, obviously not to them, but as someone who struggles to get the dates needed for Mr Man, especially now that there is only one respite bed for the whole of the north of the county, I feel it is a shocking waste of resources to book a bed for use when you know full well that it will remain empty. What happened in the summer is a classic example; I didn’t know until less than one week before I was due to go away whether the bed would be free on the Thursday night or not. Is this the kind of attitude that staff have at all of these kinds of homes?

To be honest I’m beginning to wonder whether it’s really worth all the stress just for a few days away. This last time that Mr Man stayed there I was incredibly worried about him as he began to feel very down on the Saturday. I couldn’t sleep that night because I was so worried about him and ended up phoning him at about 2am to make sure he was ok. Even after all this time I can’t shake the thought that he might seriously harm himself or even attempt suicide. I suppose after living with that very real fear for so long it will never leave me entirely. My only comfort is that when he is in the respite home he is not completely alone, so if I suspected that something was seriously wrong I could get the staff to check on him.

On Sunday evening I was so relieved to have him home again with me. Our true respite.



*In behavioral medicine, proactive often refers to a treatment approach where a therapist initiates contacts as opposed to reactive where the responsibility for contacts with the therapist is entirely on the client. - Wikipedia

My Second Letter of Complaint

I’m really sorry that this blog seems to have become all about my ongoing complaint, rather than all issues relating to Schizophrenia and Mental Health care in general.

After receiving a letter from the Chairman of the Trust this morning I have been really angry all day. All I keep thinking is “How dare you! Don’t you dare try to sweep my complaint under the carpet again like you did last time!” and I’ve just been pacing the floor all day because I’m so angry.

I’ve written my letter of response anyway, and I would really appreciate some feed back on how it comes across and if any of it should be changed.


“Dear [Mr Scumbag],

Thank you for your letter dated 4th April 2007. Like you, I have also decided to copy this letter to all parties concerned, including [the name of], the Manager at [the respite home], and [the name of the], Complaints Manager.

Personally I find it completely inappropriate and unprofessional to point out the supposed errors of an individual in a letter and then forward it to so many people, thus undermining their authority on a particular subject in the eyes of others, but seeing as you have set the standard in this regard I presume you have no qualms with me doing likewise.

As you so rightly pointed out, the reductions in your budget which took place last year did not affect the funding of [the respite home], but to say that [the respite home] has been “wholly unaffected by those changes” is inaccurate to say the least.

As you well know, [the respite home] offers a range of services as well as short term respite, including but not limited to rehabilitation for individuals who have become less independent through prolonged stays in hospital, with 24 hour support. Previously [a different home] also provided this service, with a total of 10 beds, 6 of which included 24 hour support. Since the “reconfiguration” of services – or cut backs in layman’s terms – [this other home] can no longer offer 24 hour support to any of its users, and provides only 4 beds for rehabilitation, 6 fewer than what was available previously.

[The respite home] is now the only service in the North of the county which provides this kind of 24 hour support for service users. In addition to this, there are obviously a great deal more people on the waiting list for rehabilitation at [the respite home] who would previously have stayed at [the other home]. In response to this, the Manager at [the respite home], [A N Other], obviously had to find ways to accommodate for this increase in demand, and so it was decided that one of the respite beds would be used for this purpose, leaving only one respite bed.

It is my understanding that this decision was made partly to fulfil demand for rehabilitation beds, but also because the respite beds were actually being underused. This brings me to the second point in your letter which was entirely false.

You state that [Mr Man] only used the services at [the respite home] twice last year, and that the reduction in this provision was based on this. I can assure you that [Mr Man] stayed three times last year, and I am happy to provide the dates of his stays if you wish me to. In fact I actually needed him to be able to stay five times last year, and I am outraged to learn that the respite beds were being underused when I needed to take advantage of them so badly. Until my recent conversation with [the Manager at the respite home] I have always been led to believe that we were entitled to only three breaks a year and no more. I wonder how other service users and their carers would feel at knowing that services which were so sorely needed were going to waste by not being offered to them.

Indeed, rather than [Mr Man] having his respite stays reduced due to lack of use by us, it is a fact that all service users who use [the respite home] have had this provision reduced.

If you are sincere in believing that your false statements are true then I am more than a little disconcerted that you appear to be so unaware of what goes on within your own Trust, and unaware of how changes to one service can directly affect another. I would appreciate you taking a little more interest in the matters at hand, rather than trying to neatly sweep the whole issue under the carpet through denial, which, in my previous experience, seems to be the usual course of action by the [county] NHS Trust.

Finally, I would just like to add that I have spoken to [the Manager at the respite home] and she has been most obliging in allowing [Mr Man] to stay at [the respite home] at least three times a year. I am very grateful to her for accommodating our needs in this way, but would like to stress that the purpose of my original letter was to highlight with our own personal experiences as an example, how cutbacks in Mental Health Services affect all service users and their carers, not simply to procure extra respite breaks for [Mr Man] and myself.”


There is so much more that I want to add to this letter, mostly insults, but I’m doing my best to refrain! I really wanted to add something like: “I find your denial patronising and insulting to my intelligence, and I wonder what it is that you have done in your life that was so great that you presume you have the right to treat another individual in such a disgraceful way.” But I thought that was a little too “Elizabeth Bennett”!

More Responses to “The Letter”

Once again it’s been ages since I last posted, and I have so much to write about that I hardly know where to start. It seems I have another strong letter to write, this time to the Chairman of the NHS Trust in our county, as I have received a response from him regarding “the letter” which has made me furious. This is the most recent response after a long line of letters and telephone calls; mostly by people who I never sent a copy of the letter to in the first place.

Following the response I received from the local MP to “the letter”, I then received a letter of response from the Acting Manager for the local Community Mental Health Team. He wrote to acknowledge receipt of my letter and to inform me that the issues would be looked into, and that I would receive a full response within 20 working days. It was obvious by the content that that he had misunderstood my letter and taken it as a complaint about the services themselves rather than a complaint about the lack of services due to cut backs.

This was proved true by the fact that I then received another letter, this time from someone who I hadn’t even sent a copy of the letter to, which was the Complaints Manager. It felt very strange to receive a letter from her, and to see her name in print again after so many years. The last time I spoke to her was in October 2002 at a meeting which included her, the Ward Manager from the hospital that Mr Man was a patient in at the time, and the Medical Director. The Complaints Manager is a very nice lady and I feel that she is possibly the only person who recognised the seriousness of how Mr Man was treated back then, and the fact that my complaint wasn’t dealt with appropriately. At the time she advised me that I didn’t have to accept the outcome of the investigation if I wasn’t happy with it, and that I could pursue with my complaint if I wanted to, but I was at breaking point mentally and emotionally and unfortunately didn’t have the strength to take it further. I will write more about the occasion when I finally reach that part in “our story”, but seeing her name again brought back a lot of memories. I couldn’t help but wonder if she remembered my previous complaint, and if she would still be as supportive of me as she was back then, should I choose to take it up again, or if it was now too late to pursue a 4 ½ year old complaint.

It seems she wasn’t the only person who was sent a copy of my letter; even Mark, Mr Mans CPN, had seen a copy of it and commented to me during his last visit that it had caused “quite a stir”. In fact it would seem that very few people within the Trust haven’t seen it, despite the Complaints Manager assuring me in her letter that my “complaint and related correspondence will remain confidential.”

I was contacted by telephone by another “Acting Manager” of the CMHT as the Acting Manager that I had originally written to was away (apparently they have no real managers, just lots of people who act like managers), and she told me that she had discussed my letter with the Manager at the respite home, who also had been forwarded a copy of my letter. (So far this is four people who have responded in some way to my letter who I have not actually sent a copy of it to, including; the Complaints Manager, Mr Mans CPN, a second Acting Manager, and the Manager at the respite home, but only two responses from people who I have actually sent a copy to; the local MP and the Acting Manager of the CMHT.)

This second Acting Manager was very friendly and eager to settle the issues that had been raised, as was the Manager at the respite home, who not only agreed to Mr Man having three respite breaks a year instead of two, but also said that if I ever found myself in the same situation as I did last summer when I needed to go into hospital I should speak to her directly and she would make sure that Mr Man has a bed in the respite home and this would not be regarded as one of his three stays. In fact, she was extremely accommodating, even saying that if I ever wanted to get away for a couple of days extra I could ring the respite home on the “off chance” to see if they had any beds available for Mr Man, as they would rather the beds be occupied than to be left empty.

Obviously, I greatly appreciated these offers, but as I explained to both the Acting Manager for the CMHT and the Manager for the respite home, the point of my letter was really to highlight how the cut backs in Mental Health are affecting all patients and their carers, not simply to procure extra respite breaks for Mr Man and myself.

My conversation with the Manager at the respite home was very interesting, as she explained to me in more detail where exactly these cut backs have taken place in our area, and that the Trust prefers to refer to them as a “reconfiguration” rather than a “cut back”.

Next I received a “response” from the Chief Executive, who is actually one of the four people who I had sent a letter to, and the third to respond. I say “I” received it, but actually it was addressed to Mr Man, and I say “response” but actually it was merely an application form to become a member of the Healthcare NHS Foundation Trust with a photocopy of his signature at the bottom. So either he’s so lazy/busy/indifferent to my complaint that all he could be bothered to do is send out this “invitation”, or he thought that my letter was so extremely well written that I ought to be on the Board of Governors. I’m guessing it was the former reason, although there is a third option; maybe he presumes that I would fancy a position on the Board of Governors as I like the sound of my own voice so much, or the sight of my own typing at least.


Today I received a letter from the Chairman of the NHS Trust for our county, who I had not written to personally, but who had received a copy of my letter from the local MP. His letter has made me extremely angry, as although polite, I feel that it is very condescending and patronising, not to mention full of crap. In part he wrote:

…not unnaturally, you have been concerned by the reductions in our budget that took place last year. I must stress that [the respite home] has been wholly unaffected by those changes. My understanding is that your husband only needed to use [the respite home] twice last year and, therefore, that is why his provision was changed from three times a year to twice a year.

Which to me, translates as: “You don’t know what you’re talking about because the cut backs didn’t even affect the respite home that you use, and you obviously don’t need the breaks that badly because you didn’t even use all three breaks last year” which is insult enough, but what infuriates me even more is the fact that both statements are completely untrue and that he has copied his letter to the four people who I originally wrote to, thus undermining my letter of complaint and making me look completely stupid.

I assure you, I will be writing a very strong letter to this Chairman. I’ll have to try to resist the urge to resort to nit picking, such as the fact that he didn’t even use capital letters at the beginning of some names, and that his printer obviously needs a new ink cartridge as the header was faded. I’m wondering if I should send copies of my reply to the additional five people who have now seen my original letter, as well as the original four, or should I just request that a copy be sent to anyone and everyone who works for the Trust?

MP Response to “The Letter”

Before sending “the letter” to our local MP I waited until I had seen Mr Mans CPN, to see who else he thought I should send a copy to. Last Thursday I posted four copies: one to our local MP; one to the Acting Manager for our local Community Mental Health Team; one to the Chief Executive of Mental Health in our area; and one to the Director of Mental Health in our area.

Today I received a reply from our local MP which read as follows:

Dear [Mr Mans Wife],

Thank you for your letter dated 15th March 2007.

I am so sorry to hear of your difficulties but thank you for bringing them to my attention.

I have written to the Secretary of State for Health, Mrs Patricia Hewitt MP and to Mr [A N Other], Chairman of [our area] NHS Trust. I will of course contact you again as soon as I receive their responses.

Yours sincerely

Well, I finally know who this “Patricia Hewitt” person is anyway…

“The” Letter

Well, I’ve written “the” dreaded letter. I’m not sure if it really covers everything I want to say, or if it says it strongly enough, but I didn’t want to a) make my letter too lengthy, or b) make it sound like I hold him personally responsible for the cut backs (you know, I didn’t want to write “I hope you die!” or anything). So, I hope I have got the balance just right. I just want to say thank you to everyone who has commented on my blog before; you may notice that I have used a couple of points from the comments section in my letter. I haven’t sent it yet, so maybe you could give me some feedback on what you think? It’s quite difficult to try to read it from another persons point of view. Knowing me, I’m bound to change the wording a billion times before I send it anyway.


Dear [Local MP],

You have no idea how much I am struggling to write this letter. I want to write to you about the issue of cut backs in mental health services in our area, but it’s very difficult to find the words to express how I feel. However, I feel compelled to at least try, after someone recently said to me: “You might only be one voice saying what needs to be said but there are lots of people in the community that share the same problems that may not be able to speak out.”

I am a carer for my husband, [Mr Man], who suffers from Schizophrenia. This year we will be celebrating our 10th wedding anniversary. [Mr Man] first became ill around November time 1999, after just two years of marriage. He was eventually medically retired from his job of 13 years in September 2001, and spent a great deal of time in hospital during 2002 and 2003. Since then he has been prescribed various medications and he is now making good progress. Life is still very difficult for him, and the little every day things that people like you and I take for granted create an unimaginable amount of anxiety for him.

For a very long time I was unable to leave [Mr Man] alone for even the shortest amount of time due to his anxieties and self harming/suicidal tendencies. This is gradually improving, but there are still limits as to when, and how long, he can be left. As you can imagine, this has made life every difficult at times and has meant many sacrifices.

The last time we were able to take a holiday together was just over 7 years ago, in October 1999, just before [Mr Man] became ill. To ask him to accompany me on a holiday now would be out of the question. For him, the anxieties surrounding a break away from home are many and varied, and he would be incapable of engaging in the usual “holiday activities”. Just a few weeks ago he began vomiting at the thought of an evening round a friends’ house and having to mix with other people.

Personally, I feel that I really need a break away. Not from [Mr Man], but from the usual day to day routine – I’m sure most people can relate to that. My only option is to take a break without [Mr Man], but of course, I wouldn’t be able to leave him at home alone.

Over the last couple of years I have been able to get away for a night or two, maybe three at the most, for a maximum of three times a year, while [Mr Man] stays in a respite home in [a nearby town]. This has equated to maybe six nights a year in total, divided into three mini breaks. I value these breaks tremendously, so you can imagine how distraught I was to find that, due to cut backs in mental health services, we can now only use these respite facilities twice a year.

Personally, I never felt that three mini breaks a year were adequete anyway, and now we only have two. I am told that in some other areas of the country, service users are entitled to two weeks every three months. That’s four breaks a year, totalling eight weeks. I’m not complaining about the length of each break though, because I wouldn’t want to leave [Mr Man] for any longer than three nights anyway; he couldn’t cope with any longer than that. But I feel that two breaks a year are disgracefully inadequate.

Although we have been using the respite home for maybe two years now, my only “holiday” since 1999 was in 2003 for three nights, while [Mr Man] was an inpatient on a psychiatric ward. This is because I choose to use the limited time [Mr Man] has in his respite home to go to religious conventions and assemblies, which are three times a year. These are very important to me, and as an ME/CFS sufferer, I find it near impossible to travel to and from the venue in the same day, so I need to be able to stay over night in a hotel near by. This obviously leaves no respite breaks free for me to be able to actually go away and enjoy a holiday, but now there are not even enough breaks for me to go to all three assemblies either.

I realise that this is completely my own choice, but I doubt that two short breaks a year would be sufficient for any carer, particularly one who is restricted in the amount of time he/she can spend away from the home on a day to day basis. Most people in employment working an average of 40 hours a week are entitled to four weeks holiday a year. As a full time carer for 168 hours a week, it seems I am only entitled to three days, twice a year.

I have lost count of the amount of times I have had to decline invitations for holidays, weekend breaks, or even just day trips. I would dearly love to visit my family in Norway but I have had to accept that this will probably never happen, as a three night break wouldn’t be long enough anyway. This weekend I have had to decline an invitation to our friends’ engagement dinner, as it is in another town and would mean an overnight stay.

Last summer I needed to go into hospital for an operation, and there were no respite beds available for [Mr Man], forcing me to have to leave him at home alone for two nights. I was told that there were “emergency” beds available, but that [Mr Man] didn’t qualify as an emergency. However, if [Mr Man] was to become very ill while I was away, then he would qualify. Despite making as many arrangements as possible to ensure that he was not on his own for long periods, by the second night he became very ill, and this led to a relapse which lasted two months. Of course, by the time he “qualified” for an emergency bed I was home again anyway, but his relapse could have been prevented if there was a bed available for him in the first place. This is another reason why I feel that more respite facilities need to be made available, to ensure the safety of service users if carers become unavailable unexpectedly or at short notice.

I personally feel that no other group of people would be treated so poorly. In my relatively short experience of mental health services, I have seen that instead of an increase in understanding of mental health issues over time, there seems to have been a decrease of such, with service users and their families being expected more and more to struggle to cope on their own. Already limited services are being cut back, leaving “service users” with no services to use. Carers who are already pushed to breaking point struggle to find the emotional strength needed to continually fight for the rights of their loved ones, whilst the patients themselves are usually too ill to do so. I think it’s shocking that such a vulnerable group of people could be treated in this way.

This brings me back to the comment made to me which I wrote at the beginning of this letter: the fact that there are lots of people in the community who share the same problems as [Mr Man] and I, but are unable to speak out. If my letter is the only one you receive regarding this issue, please do not presume that [Mr Man] and I are the only ones affected by it.

I hope you will give my letter serious consideration, and I look forward to hearing from you in due course.

Words Fail Me

Like a lot of people I suspect, I have difficulty in coping with stress and negative emotions, so I have been suppressing my feelings in the only ways I know how: eating and watching jolly musicals. Eventually I had to ask myself: “What exactly am I suppressing?” and I had to admit: “Anger”. Anger and frustration.

It’s been five weeks now since I heard the news of the closures of three respite homes in our area, resulting in Mr Man’s respite home only being able to offer two short stays a year. For five weeks I have tried to avoid the issue. I need to write a letter of complaint, but words completely fail me.

When I had to write a letter of complaint about Mr Man’s care in hospital back in 2002, and subsequently met with the Medical Director, the whole experience completely drained me emotionally. I was left exhausted and on the verge of a nervous breakdown.

In the same year I had to fight for Mr Man’s right to claim DLA (Disability Living Allowance) because the incompetent doctor that he was under at the time was insisting that Mr Man wasn't even ill, which meant numerous phone calls, letters, a meeting with the local MP, and finally a tribunal.

Now it seems I have to fight again, but I just don’t know if I can.

Where are carers expected to find this endless supply of emotional strength, to be able to continually fight for the rights of their loved ones? Or maybe that’s the whole point: pick on a vulnerable group of people who are unable to find the strength to fight back?

The Government Has Mr Mans Axe

“Hope things are ok Mr Mans Wife, things are very quiet on here at the mo. Hope things are going good”
Slurry from Surrey

Slurry, thank you for your concern for our welfare due to my lack of posts recently; I really appreciate it. Sorry for not updating my blog sooner.

I hope you don’t mind but I have decided to write my reply as a post in case others have been wondering why things have been so quiet on here recently as well.

Things have been ticking along quite nicely, thank you for asking. No major upsets (until last night, which I will come to shortly), but although Mr Mans concentration has improved greatly since changing the Risperdal to Abilify, his anxiety has worsened, so as usual it’s a balancing act, getting used to coping with a different set of problems. He was a great help to me while my own symptoms were bad though, and his confidence in cooking microwave dinners is growing!

I did start writing a post to follow on from where I last left off, just after Mr Mans first hospital admission, but I kind of got “stuck”. Obviously it’s not “writers block” in the traditional sense of the word as I don’t need a great deal of imagination to simply retell real life events, but I struggle in other ways. Although I have received the compliment of having my writing described as being “eloquent” I really feel that my amateur efforts don't always do our experiences justice, and I struggle to know how to even put my own feelings into words. I also struggle to know what to include and what to leave out, and to remember the order of events. Hopefully I’ll get back to finishing that post soon though.

In the mean time I telephoned Mr Mans respite home this weekend to book him in for a couple of nights in March…

Some time last year we received a letter explaining that due to cutbacks Mr Mans respite home may be closing. I’ve been expecting to receive another letter to confirm whether this is to be the case or not, but have heard nothing. Last week I bumped into a lady in town who I know uses the same respite home, and she told me that it is to stay open, although some services have changed. I was relieved. However, when I phoned this weekend to book Mr Man a bed for a couple of nights, it was only after I specifically asked how things would change for Mr Man that I was told that each person is now only allowed to have two respite breaks a year, instead of the previous three. (This is where I start to struggle with being eloquent)

Before Mr Mans first stay at the respite home he was assessed, and it was decided that he could only stay for a maximum of three nights in a row. He didn’t often stay for the maximum stay allowed, only perhaps in the summer, and the other two breaks he would stay for one or two nights while I got away for a couple of days. As I’ve said previously, I don’t actually need a break from Mr Man, but everyone needs a break away from home and the realities of life now and again. Mr Man wouldn’t be able to cope with coming with me on a holiday, so my only choice is to leave him in respite while I get away. We’re talking about maybe six nights in a whole year, broken up into three mini breaks. Now I can only have two mini breaks a year.

The thing is though, it’s not like I even ever have an actual holiday. I use those respite breaks to be able to go to religious conventions and assemblies three times a year, which are very important to me, so I spend each day concentrating on the program, and then by evening I’m exhausted. Still, it’s a change of scenery and I wouldn’t miss a convention just to go and picnic on a British beach somewhere (and lets face it, there’s no time for me to actually leave the country and come back again), but I do wish I could have a proper holiday sometimes. This particular time in March I was planning to visit some places of interest on one day, and go to the assembly the next, and that is the closest I was going to get to a holiday for the first time since 2003.

I cancelled the two nights I had just booked, and when I put the phone down I started to cry. Mr Man feels so guilty, but I tried to explain to him that it’s not his fault; he can’t help it.

As well as the obvious disappointment I’m angry that they didn’t write to me to let me know what was happening. I asked the brainless Jim about this (that dozy bloke who is supposed to be Mr Mans care worker in the respite home), and he said to me: “Well because [Mr Man] is doing so well, we thought it best not to phone because it’s not always a good thing to remind people that they’re in need of services”.

Oh really? Well don’t worry about that mate; we still have the memory of Mr Mans two month long relapse after being left alone for two nights* to remind us that he is still in need of services. And weren’t you the one who said that Mr Mans respite breaks are for my benefit, so that I can get a break? Didn't you think I needed to know that these services were being reduced? And when exactly was the last time I had a carers assessment to see if my needs are being met? And who exactly told you that Mr Man was doing “so well”? Mark, Mr Mans CPN, the eternal optimist who thinks everything is fine as long as Mr Man hasn’t chopped his own head off, and who hasn’t actually seen Mr Man since November? How the hell would he know how Mr Man is doing? Mr Man gave up telling him how he feels months ago.

Still, he really hasn’t chopped off his own head, has he? So I suppose things really are fine. Or maybe it's just because the government has his axe at the moment.



*Due to lack of beds in the respite home, Mr Man had to stay at home on his own for two nights while I went into hospital for an operation in August.

Friday

Friday was a very stressful day really. Mr Man had an appointment with his psychiatrist in the morning, who thankfully is a very caring and experienced doctor. This hasn’t always been the case though with the various consultants that he has seen over the years, and unfortunately I think the bad experiences we have had, particularly when he was an in-patient, has left him in such a state that he always suffers high levels of anxiety whenever he has to see a mental health “professional”.

Presently the medication he has been taking is Clozapine and Risperdal, and as previously mentioned he still struggles a lot with the negative symptoms of his Schizophrenia. Also, although the positive symptoms have been reduced dramatically, they are still there. For this reason his psychiatrist, who we will call Dr Hilary, has decided to wean Mr Man off the Risperdal (Risperidone) and introduce Abilify (Aripiprazole). Apparently there have been good results with patients taking Abilify with Clozapine, and Mr Man has spoken to patients himself who have had good results with Abilify alone. That being said, we are obviously still worried about not only the transitional period between the medications, but also whether this other drug will really work for him. All we can do is wait and see.

As the day went on, anxiety levels were increasing for both of us, as he was booked to go into his respite home that night for a couple of nights. I was going away on Saturday, leaving early in the morning and staying over for one night, so I needed him to be able to stay somewhere where he would be safe. Neither of us really like him having to go into respite, but we use it out of necessity, and neither of us have really recovered from him having stayed at home on his own in August when there were no beds. He obviously can’t cope at home on his own, and he wouldn’t cope with the activities that I get involved in while I’m away, so the only thing we can do is book him in somewhere where he will be supervised so that he will come to no harm. He hates being away from home though, so this causes him a lot of anxiety, and it’s really his anxiety that causes me to feel anxious, as I feel so bad for “making” him go there. I dread the moment when I actually have to drop him off and say goodbye; it’s like leaving him at the hospital all over again, and I always cry once I’ve left.

When I dropped Mr Man off at about 10pm the staff were in a “change over” meeting, where one lot of staff finish a shift and another lot start. We were asked to wait in the lounge until they had finished, and were offered tea and coffee which I thought was very nice. However, when the meeting had finished we were confronted by a staff member who was a right grouchy old bag, who complained about my being there, as visitors don't usually stay that late. I pointed out to her that we had been asked to wait there, to which she replied “I know” so I don’t really understand what her problem was. She then said we were expected at 7pm. I have no idea why as we didn’t specify what time we would be arriving, and no one has ever suggested that it should be by a certain time. I had explained to the other member of staff though, that with all good intentions unfortunately “life” happens and that was the soonest we could get there. Being greeted with that didn’t make me feel any better about leaving Mr Man there and it didn’t help to settle his anxiety either. When I spoke to him later on the phone though, he said that she was ok with him in the end. Unfortunately past experiences make me ready for a fight at the first hint of unpleasantness.

After assessing the level of his illness, they will only take him for three nights in a row maximum, although he usually only stays for one or two nights, and all of their “guests” are only entitled to stay three times a year. I wish it was more often, say six times a year, as I’m sure that if he stayed there more often he would become more relaxed about going. It doesn’t really give me many opportunities to get away either, and the last time I had a real holiday (which was only four days anyway) was in 2003 while Mr Man was in hospital.

Unfortunately though even this limited service could soon come to an end, as closure of this facility is on the cards due to NHS cut backs. What we will do then I have no idea, and to be honest I’ve tried not to think about it, although I know I should. I think I may have missed the deadline for writing a letter of appeal, although I shall do it anyway. It’s just sometimes so difficult to put into words how I feel about issues like this, so I suppose that’s why I have put it off for so long.

It's not that I need a break* from Mr Man - why would I? We love each other and we love being together. But I do need a break from the house and the usual routine of things, I think most people do, but I can't go on a holiday with Mr Man like most "normal" couples would. I miss that so much.

*I’ve mentioned Jim before, Mr Mans key worker at the respite home, and how stupid he is. Recently he said to Mr Man that he should think about going in for respite more often, to give me “a break”, and not just when I’m going away.

1. He can’t go in more often; he only gets three respite breaks a year.
   
2. I don’t need “a break” from my own husband, and thanks to that careless comment I had to spend a great deal of time reassuring Mr Man of that fact.
   
3. If we wasted respite breaks with me staying at home, we wouldn’t have anywhere for him to go to be safe when I go away.

Where do they find these people?

Back to the present day

Mr Man (my husband) isn’t very well at the moment. I mentioned previously that high levels of stress can aggravate his symptoms, and that is the problem at the moment.

I went into hospital at the beginning of August to have my gall bladder removed, so apart from the usual anxieties that you might expect like “What if something goes wrong?”, he also had to stay at home on his own as there were no beds free at the respite home that he would usually go to in a situation like that. He hadn't had a night on his own since becoming ill. Thankfully these days they like to send you home very quickly after an operation, so I was only away from home for two nights. He struggled on the second night, and he definitely wouldn’t have coped for a third.

I have several issues with how things were dealt with during this time, none of which are worth complaining about officially as I have learnt from past experience that no one will take any notice and it will only result in me feeling unheard and frustrated, and probably in need of counselling again.

The first thing is that it was clearly stated in my hospital notes that I am a primary carer and that I would need 12 weeks notice before my operation, to make sure that my husband had a bed in a respite home. I actually received less than 3 weeks notice. I could have cancelled and waited for a different admission date but Mr Man felt it was better to just get it out of the way as I have been in quite a lot of pain with the gall stones. Anyway, chances are I would only have received 3 weeks notice for the second date as well.

The second problem was the unhelpfulness of the staff at the respite home. As soon as I received the hospital letter I called the respite home straight away to book Mr Man in, but of course there were no beds. That’s nobodies fault I suppose (except the hospital maybe), but what annoyed me was the stupid conversation that I had with Mr Mans “key worker” from the respite home. We’ll call him Jim.

After explaining the reasons why I needed the specific dates I had asked for, and after Jim explaining that there were no beds available on those dates, he then proceeded to say to me (and you’re gonna love this): “If you could put it off till the weekend starting the 11th, we have beds free then”. I was in complete disbelief. Does this man think that I can phone the hospital and book the dates that are convenient for me to go in for an operation? Apart from the obvious bed shortage, does he think that the surgeon will come in on his day off just to do one operation? I tried to tell him that the 11th was no good, as my admission date was the 7th, but he just continued to give me a list of all the dates that they had beds free, well into September. It’s rather worrying that people like this are responsible for my husbands care.

After that pointless and frustrating conversation I called our local community mental health team to speak to Mr Mans actual key worker. We’ll call him Paul. Paul tried to find a space in another home, but unfortunately everywhere was booked up. There were "crisis" beds in the respite homes, but apparently Mr Man didn't qualify as this wasn't a crisis situation. I’m not sure what exactly qualifies as a crisis situation. Jim said that the beds are there as an alternative to prevent patients from having to go into hospital, but previously when Mr Man needed to be admitted into hospital and I asked if he could go into respite instead we were told that the staff at these homes are not qualified to care for a patient who needs to be hospitalised. So as usual, I suspect we were being told whatever fitted in with their own agenda at the time.

Anyway, Paul said he would be in touch to make arrangements for home visits while I was away. I waited, and waited. A week had gone by – nothing. I don’t usually have any complaints about Paul, he really is a top bloke; down to earth and very caring. But on this occasion I felt like everything had been left up in the air with no definite arrangements for Mr Mans care, which was my third grievance. It was getting nearer to my hospital admission date and I was getting anxious.

To be honest I really wasn’t worried about my operation at all. I was worried about the recovery time, not knowing how Mr Man and I would cope with day to day things while I was recuperating, and knowing that usually unless I cook, he won’t eat. I was also extremely anxious about Mr Man being at home on his own over night, knowing that quite often he will call me on my mobile when I’m out because his symptoms have become worse after only being at home on his own for a couple of hours, and sometimes he doesn’t want me to go out at all. At least when I’m out he knows he can phone me and I’ll come home. How was he going to cope with knowing that no matter how poorly he felt I wasn’t going to come home for at least a couple of days? What if the voices got really bad? What if they told him to harm himself? I was worried about whether he was going to drink enough as well, as the temperature was 30°C and I often had to remind him to drink. And finally I was worried that he would forget to take his medication; and that on my return I would be trying to cope with him in a worse state than usual, whilst recovering from an operation. But I wasn’t worried about the operation itself.

Eventually, with only a week left to go before my admission date, and having still not heard from Paul, I went to the community mental health centre to ask to speak to him, but ended up having to see Mr Mans CPN (Community Psychiatric Nurse) who we will call Mark.

I hadn’t gone to Mark previously because, as Mr Man quite rightly says: “As long as I haven’t chopped my own head off, he thinks everything is fine”. And that is exactly how he is. Mr Man used to be seen by a different CPN who recently had a job change, so now he is seen by Mark, the eternal optimist. My meeting with him went exactly how I had predicted – that he wouldn’t really take my concerns seriously until I had burst into tears and given him graphic details of what I was afraid of and cited past experiences as a point of reference. Just once I would like to be able to simply say to someone “He won’t cope” and for that person to actually trust my judgement and act on it without questioning it. After all, I do actually live with the man. I know what he can and can’t cope with. Grievance number four.

I had already arranged for my brother to bring Mr Man to the hospital to see me each afternoon, as at this point I wasn’t sure how long I would be in for. Also, my friend and her Mum were going to take it in turns to pick him up in the evening and cook a meal for him. After telling Mark what arrangements were already in place we talked about how to make sure that my other concerns were taken care of, such as getting my friend to remind Mr Man to take his medication when she dropped him home in the evening. Mark also arranged for someone from the community mental health team to pop in and see him each morning for 20 minutes or so, to check that he was alright. Mark assured me that if they detected that he wasn’t coping, they would arrange for him to be taken into a respite home, into one of the crisis beds.

Although that relieved my anxiety at the time, I don’t think much to their detection skills now. As I mentioned, Mr Man seemed to cope with the first night, but by the second night the voices had become very bad and they were telling him to cut himself. He finds it very hard to resist doing what they say when they become this persistent, as he often feels that if he just does what they say they might finally shut up and leave him alone. He was even considering what he was going to use to cut himself with. He said he managed to resist because he kept thinking about how upset I would be. The internal conflict must have been unbearable. He didn’t tell the staff how he was feeling when they came to see him. Let’s just say that some people are less approachable than others, and those ones tend to be less discerning as well. I know in the end it didn’t matter that they hadn’t picked up on how he was feeling the following morning, because I came home that day anyway, but what if I hadn’t?

Of course, I’m home now, but nearly 6 weeks later Mr Man is still suffering from the effects of that added stress. The voices are still bad, which is causing him a great deal of anxiety, and for a while he was really struggling with some of his previous delusions, and still is slightly. I’d like to mention what they are, but they won’t make much sense until I have explained the background, and I’d like to tell the story in order. I’ve had to ban him from reading this blog in future because it has been bringing back too many memories for him and it’s too distressing. I definitely don’t want him to read about his own delusions, as that could easily trigger them again, or reinforce the ones he is still struggling with. He often seems to be walking a fine line between the delusions and reality; I expect that’s because he struggles to believe that the voices are not real, so consequently he struggles to believe that what they say isn’t real either, and what they say feeds the delusions. The delusions and hallucinations are closely linked in this way.

I just feel like once again we have been left to cope with the situation on our own. We were more or less told "There are no beds so you'll just have to cope". The most input we had from the community mental health team was 20 minutes of their time for two mornings, from people who were so out of touch with Mr Mans problems that we might just as well have got a stranger to walk in off the street to ask Mr Man how he was feeling.

Mark keeps talking about pushing the boundaries, so that in time Mr Man can cope with more and more. Trust me, I push his boundaries on a regular basis, I know when something is going to push him too far. I push his boundaries every time I expect him to come out with me and mix with other people, I push his boundaries every time I invite people round, and I push his boundaries every time I leave him on his own for a few hours. Leaving him on his own for two nights was pushing it too far.

When Mark comes round Mr Man won’t even tell him how he feels anymore, because he’s tired of not being taken seriously. I don't know how long it will take for this current aggravation of his symptoms to settle down, but in the mean time I've had to have my anti-depressants increased due to the added anxiety prior to my admission, and Mr Man is having to take more Diazepam. But he "hasn’t chopped his own head off, so everything is fine".