The last few days Mr Man hasn’t been feeling very well. The voices have become intrusive again and he’s been anxiously pacing the floor and standing by the window checking for people watching the house.
I know I have to expect that his symptoms will fluctuate, but it’s so disheartening when he’s been doing so well. I just hope that this isn’t a result of the extra responsibilities he has taken on recently, and I hope that he will still feel able to manage them.
Thank you to Seaneen who has awarded me with the “Thinking Blogger Award”. What this really means is that I have simply been tagged with a glorified meme, but I feel honoured just the same!
According to the rules, you can only select others to receive this award if you have received it yourself, and you must link to the origin of the meme.
I would say that many of the blogs I read are enlightening or interesting in some way, but to be given the “Thinking Blogger Award” I suppose they really have to be ones that either inspire me to write my own thoughts on a subject, make me question my own opinions, or make me think deeply in some other way. Bearing this in mind, and in no particular order, I nominate as follows:
Mental Nurse – often inspires me to write of my own experiences, and has helped me to realise that some psychiatric nurses actually care about what they do.
The Police Inspector Blog – has helped me to see the human side of officers who try hard to protect the public, although often with their hands tied behind their backs.
Pole to Polar – no other blog fires me up in quite the same way and makes me want to walk the streets of London in protest!
Forensic News Blog – makes me think in more of an academic, scientific kind of way. A fascinating blog, with content that often leads to additional research on my part.
A Long Walk to Forever – thought provoking in a beautifully simple kind of way. Her quotes often leave me speechless.
To all of the above:
Congratulations! You’ve won a
Should you choose to participate, please make sure you pass this list of rules to the blogs you are tagging. The participation rules are simple:
1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think.
2. Link to this post so that people can easily find the exact origin of the meme.
3. Optional: Proudly display the “Thinking Blogger Award” with a link to the post that you wrote.
The daughter of the man mentioned in my post entitled “Helpless” managed to get her Dad to the Community Mental Health Day Hospital last week, and he saw a psychiatrist there. His medication has been changed, and his daughter bought him a mobile phone so that she can ring him daily. Despite having a full time job and being a single parent with two children to look after, she has realised that she now has to take control of his care, and has decided to go with him to all of his appointments.
The strain of the previous weeks events, coupled with the realisation of her responsibilities as her Fathers carer, finally took its toll on her over the weekend, and she broke down in tears. I spoke to the new* Carer Support Worker at the CMHT today to get some support for her.
Funnily enough, the first question I was asked was “Who is her Dads Care Co-ordinator?” I don’t understand why people who actually work in mental health automatically presume that people always have access these services, when they know full well that these services are limited and many people are going without. Anyway, the lady said she would look into the matter and find out why he doesn’t have a CPN, and also contact the daughter to offer her support.
In other news…
Mr Man is doing exceptionally well at the moment. He keeps surprising me by taking on more and more responsibilities.
In my last update I wrote that as well as attending Table Tennis practice regularly, he was also taking part in the Summer League and helping out with coaching. Despite the Summer League and the coaching being held on the same night, and thus taking him out of the house for 4 ½ + hours on that night, he seems to be coping with that very well. He has also started going to practice twice a week now instead of just once a week, and this week he has decided to go to coaching nights twice a week as well! That will take him out of the house four times a week!
His offer of redesigning the club website has been accepted, which now means he is a member of the Clubs Committee, and last week he attended a Committee meeting. After the stress of having to speak up at the meeting about his plans for the website, he began to feel very unwell and the voices started becoming very intrusive. He excused himself and sat in the locker room for a while and had a drink, and then returned when he felt able to. Obviously he is still having problems from time to time but he is coping with his symptoms much better now.
And finally, Mr Man has also been asked to Captain his team next season. It seems that since it was announced at the Committee meeting that Mr Man will be able to save the club nearly £200 a year in hosting fees, he has become flavour of the month!
*This new position is something I had been meaning to write about for ages. I suppose now it is a topic for my new blog.
Following on from yesterdays post entitled “Helpless” I would like to continue part of the discussion that followed in the form of a blog post, as I feel that the struggle to access services for people suffering with mental health problems is an important issue which many people may be unaware of.
Catherine said:
“Your post left me feeling sad and empty inside. Recently I have read a lot of posts coming from bloggers saying that the very people that are supposed to help them, aren’t.”Catherine, the whole situation leaves me feeling sad and empty as well, but also angry. As you have found from reading other blogs, this isn’t an isolated case, and this is an important issue that mental health services need to address.
“Is this just what happens when you cannot fight for yourself? Everyone ignores you?”The fact that people find it so hard to access services even when they have someone fighting for them suggests to me that there must be people on their own who are not getting help at all. I suppose this could be for a variety of reasons; for a start, people working in mental health aren’t psychic, so unless a person states that they need help no one will know. But I feel that once a person is known to a CMHT they should be provided with an adequate support system, and this is where they are being failed.
“I totally understand what you were saying in that post. In regards to “where is the CPN” etc, if it’s not Mon-Fri 9-5 they don’t want to know, even in those hours they probably wouldn’t want to anyhow.”Slurry, you’re right, the fact that Community Psychiatric Nurses only work Monday–Friday, 9-5 is less than helpful. But the reason why I asked the questions: “Where is this mans Care Co-ordinator? Where is his CPN? Where is his Care Plan?” is because I don’t think he even has any of these things, although he should have.
I think my first experience with someone with mental health problems was when I was seventeen. I think I may have been on my way to the shop that was just over the road from where I lived when I saw a woman, obviously in a distressed state, walking down the road talking to herself. I went after her to see if I could help.
I remember the woman wasn’t dressed properly, although I don’t remember what she was wearing. She had slippers on her feet, and she held an unlit cigarette to her mouth. As she walked down the street she looked straight ahead, not even noticing my presence. She kept repeating herself over and over again saying “My husband has left me, my son has gone, and I don’t know where I am” I remember the inflection in her voice so clearly as if it was yesterday. I kept asking her if she knew her address. Could I take her home? Was there someone I could call for her? She didn’t see me or hear a word I said; she just carried on walking and talking, repeating the same thing over and over again. When we got to the bottom of the road, she crossed over and started walking back up the other side. “My husband has left me, my son has gone, and I don’t know where I am” I had no idea what to do to help her. I didn’t want to leave her to get help because I wouldn’t have been able to find her again.
"Portrait of a Woman Standing in a Street at 11.23 am"
by Phillipa King
Trying to catch up on some blog reading, I came across an article today written by Bipolarmo on Mental Nurse, entitled Sleeping with the Enemy. It’s about the stigma surrounding mental health - in mental health. In the one place where you would expect to find understanding, some nurses clearly have a poor attitude towards those with mental health problems. It seems that on some wards, if one of the staff members suffers* from mental health problems they fail to gain respect from their co-workers and become something of a laughing stock. Such an attitude towards fellow workers with mental health issues is obviously a reflection of how they feel about people with mental health problems in general, and raises the very serious question of whether such ones should work in mental health.
I've seen this “them and us” attitude in nurses on the ward myself. They wrongly presume that they are immune to the possibility of ever having mental health problems of their own, and view themselves as superior to such “weakness”. As Bipolarmo so rightly points out, how is an attitude like that supposed to help break down the stigma surrounding mental health? Why do some nurses still have this archaic attitude? Did they get their training from cave walls? If mental health staff haven't realised by now that the patients are neither “stupid” nor “weak” then how can we expect the general public to understand?
I think that people who have experienced mental health difficulties themselves would undoubtedly make very good psychiatric nurses - certainly they would be very approachable. In my experience, people with mental health problems are often intelligent; sensitive to peoples needs; gifted, and deep thinkers. I can’t tell you how angry it makes me feel to know that some people who are trained to help these ones view them with such contempt. Do they view people with physical diseases this way? In reality, some of the patients on psychiatric wards are more intelligent and often more gifted than many of the nurses. Rather than looking at people with mental health problems with disdain, nursing staff should feel humbled realising that mental illness, like any other illness, knows no boundaries and can affect the small and the great alike.
You know, when Mr Man was first in hospital we both had such a traumatic time, both with coming to terms with his illness, and with coping with the attitudes of some of the staff. One day this girl smiled at me and started chatting. She asked me how Mr Man was doing, and then asked how I was coping. I was shocked because Mr Man had already been on the ward for quite a while and she was the first person to ask me that. Do you know who she was? She was a patient who had just been moved to the Acute ward from ICU. She went on to tell me that when she is well again she wants to work in mental health. I sincerely hope that she has achieved her goal.
Well, that’s a little bit of an exaggeration, but I have been asked to speak on the radio about carers issues during Carers Week, which is next week. I declined, as speaking publicly isn’t really my forte, and getting up early in the morning even less so! Personally I find it easier to write what I want to say as it gives me more time to think over my words. Regular readers will know that I often edit posts several times even after they have been posted, but once a word has been spoken it can’t be changed. I can’t say I’m not flattered though.
This all came about due to a Carers Reference Meeting that I attended last week, the purpose of which is for services for Mental Health service users and their carers to be discussed and developed. The experience was enlightening, and I will definitely go again. I’m glad to see that services are slowly improving and are better now than what they were when Mr Man first became ill, and it’s nice to know that my experience can be put to good use and that I can have a say in services which are being developed for the future.
I have written an article about carers which the powers at be have decided is good enough to use, although I’m not sure yet how it will be used exactly. I won’t post the article here as I feel that this blog is starting to steer too much towards carers issues and my complaints about lack of services rather than our experiences in dealing with Mr Mans illness and how he has been treated by Mental Health professionals.
I have however, decided to create a new blog where I can write about these kind of issues. The blog is entitled “Do I Look Like I Care?” as I would like to draw attention to the fact that carers come from all walks of life and can be any age, male or female, and cannot always be picked out from a crowd. From now on, this new blog is where I will discuss any complaints about services, and I will also try to post an update each time I attend the Carers Reference Meeting.
My last post left me trying, unsuccessfully, to chase the Black Dog away for the rest of the day. Cinnamon Swirls didn’t fix it, and neither did driving up and down the dual carriageway at 70mph with Craig David damaging my eardrums. But when I picked Mr Man up from his table tennis practice tonight, all my sadness seemed to melt away as I listened to him enthusiastically detail his evening.
Mr Mans table tennis season came to an end last month with his team finishing in second place in division two and with him just narrowly missing third place for the average number of games won. Considering he had two relapses during this time (one caused by stress and the other due to a medication change) I think he did amazingly well. Next season he will go up into the first division.
Last summer he didn’t cope so well once the season had finished as he had nothing to focus his mind on, but I’m pleased to say that now his club have their own dedicated premises so they will be able to stay open for the whole summer. A summer league has been organised, which Mr Man is taking part in, and the premises can be hired throughout the summer for practice.
I am amazed at how well Mr Man is doing at the moment. When I think back to the beginning of the season, he didn’t want to mix with players outside game nights, and he often didn’t want to go to practice nights either. When he did go he only stayed for about 45 minutes. He started going more regularly when he started losing games on game nights! After a while he increased his time at practice nights to an hour and a half, mainly for my benefit, so that I would have time to see a friend for an hour in between dropping him off and picking him up. He started chatting more with other players, and at the summer league earlier this week he even exchanged numbers with one of them! His new friend text him today, and they arranged to go to practice earlier than usual, so he was there for two hours this evening. His friend can’t make it next Friday though, so they’ve decided to practice together on the Saturday!
I know this probably sounds like nothing unusual to other people, but to me it is a real breakthrough. Mr Man hasn’t interacted with others as well as this since about 2001.
He played really well tonight. Now that he is taking Citalopram he seems to be coping much better with his anxiety, and no longer needs to use Diazepam, so his reactions are much quicker. Tonight he outplayed a premier division player who won 85% of his games last season! Not surprisingly then, Mr Man has been asked to help out with coaching, which he has agreed to (and seems to be looking forward to), even though the summer league is on the same night of the week, so it will mean being out of the house for about 5 hours on that night! I asked him if he thought he would be ok, but he didn’t seem worried, he just said “Well if I don’t cope very well I’ll just tell the bloke who organises it that I’m not very well, he’ll understand”. This surprised me as Mr Man doesn’t usually like to admit that he is unwell, in case people ask what is wrong.
He has also decided that he is ready to play in two leagues next season, which will mean more nights out of the house, and he has volunteered to redesign the club website, and to update it weekly, so he has lots of things planned to keep himself busy and his mind occupied.
I am so proud of him. He has shown amazing strength and courage.
2002
We lay in bed talking last night. Mr Man told me that the last time he met with his Dad he had asked him about his illness.
“What did you say?” I asked.
“I told him about the numbers thing. He asked me if the voices ever give me the lottery numbers!”
I laughed.
“I’m not really sure how much he knows about my illness” he continued.
“You could always direct him towards my blog, although I’m not sure how he will feel when he reads that I wanted to kill you!” I joked.
Then the conversation turned serious.
I never wanted to be without Mr Man, I just couldn’t bear to watch him suffer any more. He had already been in hospital for 6 months, and had come home no better than when he went in.
Recalling how I felt I started to cry.
I didn’t know how I could help him. I had let him go into hospital in good faith, thinking that the staff would care for him and make him well. In reality he had suffered more in their hands than at home. They called him a liar, mocked him, humiliated him, criticised him, cornered him and argued with him, obviously aggravating his already debilitating symptoms. The consultant was sadistic, and deliberately caused him physical suffering by keeping him on medication that caused him pain, but offered no relief of the actual symptoms. He was visibly amused when I tried to challenge him.
So many times I wanted to take him away from that place, but where to? What did I have to offer him that would make him well?
After everything he had been through I was relieved to have him home again, even though it meant 24 hour care. My friends tried to tell me that it was too much for me, but I wanted to do it. I showered him in love more than ever before, trying to make up for the suffering he had endured at the hands of the hospital staff. I felt I had failed him by not being able to protect him from them. My complaint went nowhere; the people at the top don’t listen to us little people.
Mr Man had harmed himself more often on the ward than at home. The only time he harmed himself at home was when I listened to their advice, and allowed him to go to the toilet on his own. I seemed to understand his illness better than they did, and yet I had no idea how to relieve his suffering; I only knew how to show him love and keep him safe. But that wasn't enough.
He continued to suffer, and at that time I believed that he would never be well ever again. I felt selfish; I knew he wanted to be dead, but I was forcing him to face his waking nightmare with no prospect of relief. I wanted to end it for him.
I could never have imagined that I would now be lying in his arms and laughing about his symptoms with him. I’m so glad that I didn’t follow through.
Related posts: Questions from Readers
Today I was checking MyBlogLog, which lists the number of views this blog has had in the last 24 hours, what readers have clicked on, and how they found my blog.
One person got here by doing the following search in Google:
“Schizophrenia long winded letters”
It’s been a while since I have written a full update on how Mr Man is doing and recent appointments and such. At the beginning of October I wrote how Mr Mans Risperdal (Risperidone) had been changed to Abilify (Aripiprazole) which he now takes in addition to the Clozaril that he has been taking since 2003. The change over period was a bit shaky, with Mr Man becoming quite paranoid and delusional, believing that our visitors were spies and questioning whether he was really ill or not. I had to keep a closer eye on him than usual for a little while, especially at medication times, as once he starts down that slippery slope of paranoia and delusion he is likely to start skipping medication secretly, which then of course leads to all kinds of problems.
It’s quite hard to gauge how much the Abilify has helped with Mr Mans positive symptoms as the changes have been gradual over a period of 7 months now. Also, for the two months before the switch these symptoms had worsened due to being on his own for two nights when there were no beds at the respite home, so to compare fairly with the Risperdal I would have to think back to over 9 months ago, which is quite difficult. It’s very obvious that the negative symptoms have improved now though and he has fewer side effects than before; he is usually more alert and less drowsy now, and his concentration is much better. In fact over the last 6 months or so he has accomplished a great deal and generally seems more motivated to engage in his hobbies. He has even talked about working again, and is keen to start his own web design business, although only if he can work from home and never leave the house!
I would also say that he is starting to interact better with more people now. Although he still can’t really cope with too many people all at once, he is definitely more willing to have company now and the list of individuals that he feels comfortable with is slowly growing.
One thing that the medication change hasn’t helped with is Mr Mans growing levels of anxiety. It’s difficult to say whether or not this problem still would have continued to worsen if he had stayed on the Risperdal, but the anxiety in itself isn’t a new problem. As I mentioned previously, Mr Mans CPN is taking this problem much more seriously now and last time he visited we talked about it at length. If only we had known more about anxiety when Mr Mans problems first started to escalate. We were using gradual exposure when we first started to tackle this issue, probably back in 2004, but Mr Mans anxiety suddenly and dramatically increased while he was out of the house on his own one day, and since then he hasn’t had the confidence to try it again. What we didn’t realise at the time though is that this experience is common and is known as the “anxiety burst”. Apparently, what we should have done is continue with the exposure, but at the time I didn’t know this and I was worried about pushing Mr Man too much and causing a relapse of his symptoms.
We saw Mr Mans Psychiatrist recently and discussed this ongoing anxiety problem. She decided to introduce an antidepressant called Citalopram, which is an idea that has been on the cards for a long time for various reasons but she felt that Mr Man needed to be more stable on his other medications first. Citalopram is the antidepressant that I take myself, and is well known for helping to control anxiety. Also, his Psychiatrist mentioned that it can help with “compulsive tendencies” as she called them, which is another problem that Mr Man has been suffering from. The most intrusive compulsive thought that he has, which is compounded by the voices, is that he feels he needs to continually add numbers together, such as 1 and 1 is 2, 2 and 2 is 4, 4 and 4 is 8, and so on, until he reaches 65,536. He always stops at that number and then starts all over again. When I asked him why, he said that there are 65,536 numbers that can be represented by 16 bits in binary. Now, binary is a concept way over my delicate little brain cells, but apparently it begins at 0 (zero) and the highest number in 16 bit binary is 65,535, which is 65,536 numbers in total including zero. I still don’t really see the connection myself, but it all makes perfect sense to him, and the more I said I didn’t understand the more detail he went into which confused me even more.
I can see why people say there is a fine line between genius and madness.
Today I have received the following comment from an Anonymous reader. I’m aware that other readers may feel the same way, and so I have decided to respond in a blog post.
It's really horrible how you people act as if being a schizo is such a terrible thing. I'm schizo and if I'd ever saw my wife writing in a blog like this because of my "condition" I would ask for a divorce.
I can’t help thinking tonight how blessed I am to have Mr Man. I have heard such awful tales recently of loveless marriages, and relationships and marriages that have failed. A lot of people that I am close to have been hurt so badly, or have never found love at all; it seems love is often far more complicated than “boy meets girl, boy and girl fall in love, boy and girl marry, boy and girl live happily ever after”. I think I have been very lucky.
I remember when I was a very little girl, my Dad telling me that if a man loves me he should treat me like a lady, opening doors for me and walking on the outside of the path. It is probably the most important lesson he ever gave me, and my Dad treated me that way himself.
Mr Man did all those things for me and more. He was the perfect gentleman in every way, and so romantic. In a very short space of time I knew that I wanted to marry him and be with him for the rest of my life. But what if we had never met? Would I be alone? Would I be in a loveless marriage, or on the brink of divorce? Many people say “I just knew that he/she was the one”, but many people get it wrong.
Ten years on we still kiss and cuddle on the sofa. We still hold hands when we go out. We still say “I love you” every single day. I’m still amazed by the way the sun catches his eyes and makes them light up like sky blue topaz. We still leave little messages for each other around the house. I still miss him when I go out for the evening and I’m not with him. He’s still my best friend.
I sometimes wonder at the miracle of love. How did we get it so right?
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”!
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.
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
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.
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.
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.
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?
