Wednesday, March 21, 2007

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…

Tuesday, March 13, 2007

Blogroll Update

I thought it was time for an update in my links list, as some of the blogs I like seem to have “disappeared” and there are other blogs that I’ve wanted to add.

The last time I posted about a blogroll update I mentioned that for some unknown reason “Up the Down Escalator” (the husband of a Schizophrenic) seemed to have been replaced with an article about Folic Acid. Well now it seems to have disappeared completely, with only a “Not Found” page from Blogger displaying, so I have decided to remove this link from the side bar. The “Sibling of a Schizophrenic” seems to be going the same way with an unrelated advert displaying instead of the blog, so I will remove this one also. And “A Schizophrenic Dad” (the daughter of a Schizophrenic) appears to now be “invitation only” so this one will also be removed as I have no idea how to contact the author to ask for an invitation!

It’s a shame because besides being interesting reads I also like the idea of people being able to read about mental health issues from lots of different angles.

Thankfully I now have some other blogs to add to my rather short links list!

Seaneen is a girl in her early 20’s suffering from Bipolar, also known as Manic Depression. Some of her symptoms are similar to Mr Mans in that she also suffers from hallucinations and delusions. It has to be said that her posts are very enlightening and are excellent reads. You can read more about Seaneen in her blog entitled “The Secret Life of a Manic Depressive”.

Marlena also suffers from Bipolar. Her blog is an interesting combination of writing and comic strips, where she introduces us to her wise four legged companion “Elvis” and her partner “Denzel” who she draws as a guitar! Marlena is currently off her medication as she and her partner are having a baby (Congratulations Marlena and Denzel!). Marlena’s blog is entitled “Bipolar Notes From Underground”.

Catherine is also a “20 something” who is a teacher, a student, and a mother, and has been diagnosed as a Bipolar sufferer, although she questions this diagnosis herself. Her posts are very moving as she is very open about her feelings, often leaving me speechless. Her blog is entitled “A Long Walk to Forever”.

And finally, a blog by a man who suffers from Schizophrenia, who calls himself “Doctor Goober Modesty” or “The Fly”. The Goober emailed me quite a while ago to ask if we could link to each other to hopefully help to increase traffic to each blog, and thus awareness of mental health issues. Well I’ve finally got round to it! Doctor Goober also has a website where he exhibits some of his art which he tries to sell to “help get [him] out of the poverty that Schizophrenia brings upon individuals”.

All of these blogs can be found in the links section in the side bar.

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.

Tuesday, March 06, 2007


He finally “got it”. Mr Man has been suffering from high levels of anxiety for so long and his CPN just kept telling us “It’s normal to suffer a certain amount of anxiety” and “Just keep doing it (whatever was causing the anxiety) and it will get easier”. Well, a few weeks ago we were getting ready to go to a friends’ house for dinner and Mr Man started throwing up due to his anxiety. And now Mark finally gets it. He finally understands what we mean when we tell him that what Mr Man suffers from is not a “normal” level of anxiety. He finally agreed to speak to Mr Man’s Psychiatrist about possibly changing his Diazepam to something else. Finally. But did it really have to come to this?

Generally speaking, Mark seemed much more human than usual during his last visit. I usually find it difficult to take him seriously for two reasons: one is that he looks like he ought to be a group member from The Village People; and two is that it’s difficult to take someone seriously when you feel like they haven’t got a clue. But this time, instead of handing out useless pieces of advice like colour swatches at a “blind” convention, he actually asked questions, and more importantly, he listened to and accepted what we had to say regarding Mr Mans anxiety. Finally.

After explaining how upset we were about the cutbacks at the respite home, he addressed the issue of my carers assessment and asked me: “Is this why you want a carers assessment? Are you hoping that once your needs are recognised they will be met?” I agreed that this was the case and he simply replied with “They won’t be. The services just aren’t available”. He then went on to explain how they are expecting many more thousands of pounds to be taken away from these services, and job losses too. No wonder he didn’t seem so cocky that day. “I feel a letter of complaint coming on” I said*, “Please do” he replied. I actually felt like we were on the same side for once. Finally.

Before he left, Mark still felt the need to advise Mr Man not to let his recent experience make him give up trying to go out, which Mr Man rather resented. He obviously still doesn’t appreciate how hard Mr Man tries to fight these feelings. Every week he forces himself to go out to play Table Tennis, and he physically shakes so much that even the other team members have started to comment on it. But he still goes, week after week. I’m very proud of him.

Maybe one day Mark will be too. Finally.

*This was nearly 3 weeks ago but as mentioned in my previous post I have been avoiding writing this letter until now.

Monday, March 05, 2007

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?