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.
