Thursday, March 08, 2007

“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.


Janice said...

As someone who works in a home for people with severe/profound intellectual disability I find what u have said re services for those with disorders affecting the brain is spot on. Some of our Residents (not just in my home-in the whole organisation I work for) require Psych intervention for various behavioural issues (aggression on self and others for instance) but they aren't getting it. Plus by the time they get it they are adults and the problem has been around since they were children in many cases.

Mr Mans Wife said...

Thank you for your comments Janice.

Some people have some very strange ideas about when and if psychiatric intervention is needed. When Mr Man was in hospital the first time we were more or less told:
"He can't possibly be Schizophrenic; he's too old"
"But he said he has heard the voices since he was a child"
"Well, in that case he can't possibly be Schizophrenic; he was too young".

Ok then...

slurry said...

Very well written letter and i think adding on " I hope you die" on the end would not be productive!! I have in my time, whilst unwell wriiten letters to the queen telling her it was ok to have a gay son, many to MPs and to Tony Blair!! I think they must have a department which deals with letters from unstable people assome have been sent back to the unit and ended up in my notes!!
Also a word of advice to anyone who might be thinking of breaking their leg, first dont do it and if you do dont ever let them take the plaster off its to painfull and you cant move!! written by me laying on the sofa and feeling sorry for myself.

Mr Mans Wife said...

Ooh Slurry, here have a cookie; they cure everything - Angela keeps giving them to me and I don't know what to do with them all.

No, I'll save the "I hope you die" comment until I receive his reply. I may write that if he's not very helpful!

Mr Mans Wife said...

I've just added another paragraph.

Slurry said...

*greatfully accepts cookie and waits for the world to be put to rights*

Becca said...

I think that's a very eloquent letter, and I really hope your MP will give it due consideration. It's brave of you to do something, even when it seems like such a challenge. It's true that the squeaky wheel gets more oil, so I hope your squeak works!
Maybe you'd consider making a form letter available to others in your area who are in your situation, one that's a shortened version of your main argument so that they can also voice their unhappiness at the cutbacks (although, only if it's not too much for you, I know how much work you said it was to do this one! Not trying to add to your already full load, just a suggestion! Ignore it if it's too much to think about.)
I've found your blog really interesting and informative (and upsetting when I see how hard you have to fight to get necessary treatment...). All the best with everything.
Becca, Glasgow.

Mr Mans Wife said...

Thank you Becca, your comments are really appreciated.

The form letter sounds like a really good idea, but I wouldn't know where to start with it. I've written letters for friends before, but I usually know their full situation so that makes the letter easier to write.

Thanks again for your kind words.

Slurry said...

maybe could do a open letter and get people to sign it on the number 10 (downing street) website and send it to as many blogs as could be availible? Just been reading on NHS Blog doc about patsy Hewitts latest idea, is respite on prescription! I cant see it happening some how, but its worth a look if just to laugh about how misinformed that poor woman is, she is becoming the british version of comical Ali we all remember from the early days of the war in Iraq.

marlena rivers said...

wow. beautifully written letter. it's terrible that you don't have some alternatives in place for someone he's comfortable with to be with your husband for a bit so you can take a much needed break. that is really something that needs to be's very important for you...
by the way in answer to your suggestion about proofreader, the fantasy of being a "reader" involved only reading for the pleasure of the story. proofreading totally changes the focus to looking for errors and having another purpose to the act of reading. that's why it's a total fantasy career!

marlena rivers said...

just curious, how did your husband do at the respite home and how did he like it? is it a good place?

Angela said...

Very well written MMW, I hope it's read by sympathtic eyes. I think the idea of an open letter or a form letter is a good one. I'm sure there are people, like myself, who would like to be able to support you in your fight.

You were supposed to eat those cookies you know! Remember, they don't count; those calories are mine. Hmm.. or perhaps you have been eating them and that explains why I've put on a few pounds lately!

Mr Mans Wife said...

Slurry, to be honest I don't like to get involved in politics. There are points that I have read in the news that I thought about including in this letter, but I decided to steer clear of any political angle. That being said, if I get no joy with my local MP then I think I might be writing a letter to Mr Blair (and of course another letter to the local MP saying "I hope you die!")

Thank you Marlena for your kind comments.
The respite home that Mr Man stays at is lovely - I wouldn't mind staying there myself! It's like a big house, nicely decorated and lovely furniture. It's not like a hospital at all, and the staff are mostly very relaxed. The office door is open all the time and "guests" can go in and chat with the staff whenever they want. But Mr Man hates it, and I actually hate making him stay there, but what else can I do? He goes without any fuss though - just for me. He stays in his room most of the time, but it seems to make a huge difference to him just knowing that there are people there.

Thank you Angela.
I really wouldn't have a clue what to include in an open letter, but I have no objections at all to people editing the letter I have written and using that to send to their own local MP's if they feel it would help.

Thank you everyone for your lovely comments.

Mr Mans Wife said...

(I meant if other people are having similar problems, and they want to use the letter for themselves)

I have edited the letter again! I said this would happen!

Seaneen said...

A very eloquent letter. xx

Anonymous said...

Dear Mr Mans Wife,
Excellent letter - send it as it is, you get your point accross very well. Have you ever been told about/or offered Direct Payments by your CMHT?

Mr Mans Wife said...

Thank you very much Seaneen and CPNurse.

Is the letter too long now? Do I waffle on a bit? Is there anything you would leave out? Sorry to whittle about it so much but obviously I want to get it right, and I have no idea what this bloke is like.

I have heard about Direct Payments before, through another carer whose husband suffers a lot of physical disabilities and illnesses. As usual the CMHT have never said anything to me about it, so I presumed that mental health patients don't qualify. I'm not totally sure how it works, but I know that my carer friend is having a lot of problems with it.

Anonymous said...

Hi, Direct Payments are now available for Mental Health, and in fact the government are pushing them, with targets for more people to take them up.
The above link from MIND gives a good explanation.

In a nutshell your husband is assessed by the CMHT for his social care needs (and these would include your carer's needs). They then come up with a number of hours a week, and you are paid this amount of money and are able to hire a personal assistant, so you are in total control of having someone when you want them. If for example you are assessed as needing 8 hrs a week in total, it's up to you how you use it, if one week you don't need anyone you can save it up and have 16 hours the next week. It's well worth asking about.

Slurry said...

I have looked in to direct payments and know a few people on them, and tho there is more freedom of choise the quility of care is still very poor, and in cases tey refuse to pay as the councils have run out of money. some one has described it as out of the frying pan and in to the fire. but anything is worth a shot!

Mr Mans Wife said...

Thank you for the link CPNurse. I will have a good look at that when I get the chance.

I don’t mean to be pessimistic but I can already foresee problems with this; Mr Man doesn’t really like strangers in the house, although I have explained to him that the carer is chosen and employed by us. Another problem I can foresee is the CMHT telling me that they want to encourage Mr Man to spend more time alone so that he can “get used to it”. They make me so mad sometimes. Every stupid suggestion of theirs always goes pair shaped – no offence. I’ll write about that eventually.

Anyway, it’s still definitely worth looking into, so thank you for the link. Knowing how unhappy we are about fewer respite breaks, I’m surprised that Mr Mans CPN hasn’t suggested it already.

Slurry, thank you for your comments on this subject as well. It’s good to hear other peoples experiences. I think the problem with the council is the problem that my friend is having. I’m surprised that you say the quality of care is poor though, because I thought the carer was chosen and employed by the individual themselves? Mind you, I wouldn’t have a clue where to look for a carer.

Thank you both for your input.

Slurry said...

The people I know who have direct payments for physical care are alot better off than having agency staff ect, but then you have to take on the role of employer, Paye, tax, Ni ect and can be very challengeing, but better for flexability. On the mental health front its still in its infancy and many of the services are brought in from local outreach services like Rethink or together and are profesional carers, which i think is good as with some mental health problems that is required and can be great for recovery, those that i know who have gone and employed people withot that prior knollage it has been really quite awfull and its not as easy as just getting shot of that person as they are covered under all employment laws. one thing it is really good for is been able to buy in your own respite weather that be in a respite home, or going to eygpt with carers with you, as one mates does. Personally I cant be bothered with it all, If i need respite I get it, I try and have as little to do with MH services as possible, i find them more of a hinderence than help, when im unwell i do need them the rest of the time I would rathernot see them, but that is not how the system works sadly. On a plus note I went back to rugby training this morning, legs feeling good and was good to be back! hope everything good with yourself and Mr Man

Mr Mans Wife said...

Ahhh yes, the PAYE, tax, and NI. I remember now why I disregarded the suggestion when my friend suggested it before. I really couldn't cope with having to sort all that stuff out, and the point of hiring a carer is to reduce my stress not add to it.

Thanks for that information Slurry. I'm glad your leg is better now and you're able to get back to your... rugby training?

Slurry said...

Oh yes, Rugby is a great game, I have played in one way shape or form since i was about 8, I play on the mixed team,its great for stress relief, dont know when i'll be match fit again, soon I hope.