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?