Doesn't Get Any Easier for Me

So, as a carer life has been something of a roller coaster for the last however many years, all things considered more downs than up for me... I've been through every emotion you can imagine, except probably joy.

Two years ago now I got the news that my wife would never be well enough to return to the community, and though the diagnosis was still unclear, it didn't come as a surprise to me... a shock yes, traumatic yes, devastating yes, but not a surprise. I'd seen the spirit ebb away from her, she was becoming an almost lifeless living body, and it was so so hard to watch it happening... I could do nothing about it. It was happening and my situation had to change to cope with things... I was totally out of control of what was happening and simply couldn't cope with what was happening to us, and getting more and more upset.

One weight was removed from my shoulders when I was able to pay off our mortgage, but my wife continued to decline... the doctors said that they didn't have the facilities or specific knowledge of her condition, now confirmed as vascular dementia, and that she would need to be transferred to a residential care home. Now, if you've ever had to make that decision, to have your wife put into a care home, with all the publicity surrounding them, you will understand how stressful that was... to be honest, it was an easy decision, I could never have coped with her at home whatever level of support I had

It was obviously the right decision, you didn't have to think long to understand that, but that doesn't begin to address your emotions, they tell you another story... and the story I was hearing loudest was that I was abdicating responsibility, letting her down, taking the easy way out. Everyone I know told me that a residential home was the right place for her, that it was unfair on everyone to think of having her back at home.

Now she is settled in a magnificent care home, much of the pressure is off me, I don't have the day to day caring chores that others have, I can carry on with my life without having to spend every minute thinking I need to be back to wash her, dress her, clean her up or any of the other countless tasks that fall to the carer

So that makes it easy for me doesn't it? Really? If you haven't been there you will never know the levels of guilt I feel... should I have done something more to prevent the onset of the condition? Should I have been braver and looked after her at home longer? Well, the honest answer is I couldn't have prevented the condition, couldn't have delayed it... it is what it is. As for having her at her... well the medical advice was "no way" the advice from the family was "no way" and I know that given that the fact that a ward of the finest nurses I have ever encountered didn't have the skills and facilities to give her the best, what chance I?.

So, open and shut case, i have nothing to feel guilty about... wish someone would tell my mind that.

And another thing... the thing that really pushes my guilt into overdrive... why the hell should I be well, enjoy the grandchildren, when my wife... who was born to be a wonderful grandma... barely recognizes anyone and cannot know and love them... that breaks my heart... and I feel such huge guilt about it all.

I am also so torn about visits... I feel I should go every day... as it is, I only go twice a week at present, and yes there's another couple of notches on the old guiltometer.

When i do go, and see the condition she is now in, it breaks my heart again... I desperately want to see her, but when I do it makes me think of all the things she should be doing, we should be doing, now... and will never be able to do them together. That is when i am at my lowest loneliest ebb.

Yes I know I have nothing to feel guilty for, I know I have to now live for myself or go under. I know this... but believe me, every emotion in my being screams the opposite... it continues to tear me apart.

Support Groups, or Not

I wrote earlier today about my current personal situation and concerns and outlined the fact that my life has now settled down an changed. One thing I didn’t touch on however was my involvement with Carer Support groups.

Well, I have reduced my involvement to give myself more “me” time so I can enjoy my bird-watching and photography. Does this mean that I have given up on the causes I have fought so hard for over the years. Well, yes, in a way it does.

Two main aspects have caused me huge disillusionment and distress… the behaviour of so many within the so called support community and the behaviour of carers themselves.

I realise that I need to justify these outrageous comments, so here goes. I’ll let you decide if I have taken the easy road or made sound practical decisions… but to be honest, I don’t much care how you see it!

Lets start with the carers themselves… as a carer I know how little support I received until I fought tooth and nail to get it, and was delighted to be doing voluntary work to make that support more accessible to all carers.

However, I now question whether the majority of carers really want that support. They need it, god knows they need it, but do they want it?

I have worked with groups who have laid on events with key speakers from all the delivery professionals, we have had a great turn out from like minded professionals who want to know everything that is going on, but despite massive publicity, do we see any carers at these events? No.

We have advertised via social networking, posters, post and every other way we can. Do we get any interest from Carers? No

We have run clinics at the Acute Units inviting Carers to come and talk to us to get the advice and support that we fought so hard to get… putting into their lap, all they have to do is say “hello”. Did we get any carers visit? No

The Mental Health Service have had a great deal of bad publicity, ok, most deserve3d, but they are moving mountains to improve things, and they want to improve things mainly by engaging fully with carers and service users. I have been a part of these initiatives, and the Trust has invest huge time and effort into setting up the events. Do any carers come along? Very few… perhaps 75% of those who had confirmed attendance the day before.

We arranged an event for carers, to celebate carers this week, many wonderful people gave their time for the pleasure of helping, to help carers, to give them support, advice and most importantly some fun. Was it well attended? No

So many Carers have said that they wish that the Trust understood how they felt about things. The Trust has bent over backwards to facilitate exactly that… and do Carers turn out to have their say… you have probably now guessed the answer… No

Now, there are many reasons why Carers do not attend these events. Of course the mere fact of caring may mean it is impossible to get someone to sit with their loved one, they may be needed for caring purposes. The Carer may be sick of telling their story or simply sick. All perfectly good reasons.

Less acceptable, to me, is the other major reason, which is stigma. There is still a stigma with mental illness, a stigma rooted in ignorance and misinformation, but it does make it very difficult for so many people to admit publicly they are dealing with a mental condition because of “what the neighbours may think”. I know it’s true, I see it in practice virtually every day.

Don’t mistake me here though, it is the fact that people have to think that way that is unacceptable, not the fact that they don’t turn out because of it. That I can understand. We have to break down the stigma… think some 20 years ago, the word cancer was almost outlawed… it is now used openly and attracts massive publicity and funding, yet mental illnesses can be every bit as devastation to sufferer and family… so why not be open about it.

The other group is support groups… now if some people read this I could be in trouble!!! But what the hell. I have worked in a group where I have always thought the idealogy was flabby, too worried about upsetting the service providers to actually do anything.

The group was also in receipt of public money to help carers, but virtually nothing was spent. Myself, and a good friend, spent over a year battling with the apathy to get the group to use the money, run events, take the challenge to the providers and actually do something. It has been a long and fruitless battle. Between two of us, we have been involved in around 10 projects with key service providers… all projects that we have sought out for ourselves or been invited to be part of… and these were the only 10 projects the group was involved in… the other members were never supportive, everything we put forward was criticised, condemned and voted down because some brainless prattos had tried it, badly, before and it didn’t work. Believe me my friend and I had the contacts and respect of the providers, and we made them work easily! What thanks do we get? Does it need both of you to attend that meeting?

Once we both became officers of the group, we started scratching beneath the surface… and found that the group was never, contradictory to what we had been told, properly constituted, had no workable procedures or policies, and the other officers were happy to take the plaudit, but did nothing for the group… the secretary didn’t arrange a single meeting, never took minutes, never did anything constructive. The Treasurer insisted everybody but himself had all expenses verified by two people, while he did his own.

We challenged this situation and tried to improve things, but it just led to so much bad feeling, we had already lost two members the year before who were nothing but arrogant obstructions, the Chair resigned, presumably to look for a backbone and Pratto and his mates continue in their own sweet ineffective way.

If they carry on, what will they do? In all the years I’ve been involved I’ve never seen any of the others have an idea or actually do anything. The relationships with the service providers are mine and my friends.

So, in the future, I am volunteering two days per week with the Recovery College, which is such a fabulous enterprise, I will continue in my various committees on the Payment by Results Programme and the Improving the Experience programme, all with the Leicestershire Partnership Trust.

I will also continue to work closely with my three good friends who have my total respect, trust and confidence (you won’t know them, but they’ll know exactly who I am referring to) on selected projects, especially in the areas of education, and of course supporting people online through twitter and facebook.

For Carers, there are many people out here who are only too keen to help you, to support you, to guide you through the hell of your situation… but we can’t do it for you… you have to stand up and ask, there has to be some input from your side as well

And then what?

Well, here is another dilemma for me… I haven’t written much about caring as such lately because, well, the situation has rather changed.

So, a brief précis of where I’ve been… my wife started out with acute psychotic depression in the August of 2004 and spent 4 months on the acute ward. The treatment was, to be generous to them… extremely poor. On discharge the out patient support veered between non-existent and damaging until in early 2009 and became seriously ill again with the same symptoms. This time the support offered by the crisis team and then acute wards was very different… it was truly appalling, the standard of service was a total disgrace, the entire staff involved need to hang their heads in shame that they could have been so totally utterly contemptuous, incompetent, callous, uncaring and useless. No, I am not exaggerating… the whole lot, exemplified by the consultant supposed to be in charge of the case and the ward were a total disgrace. I do not believe any of them should have employment in any service dealing with human beings… bitter? Yes I am… but I have been able to get over it.

During this time my own health, both physical and mental deteriorated seriously, I had two breakdowns, totally lost my self confidence and self esteem and was permanently exhausted… oh yes, and at times like these you find out who your friends are…

My friends was certainly not the CEO of the trust who dealt with my complaint by telling me that if I followed up my complaint it would adversely affect my wife’s treatment. No, it couldn’t… couldn’t have been worse.

Eventually when elations between me and the so called consultant hit total rock bottom my wife was transferred to a different unit, a treatment and recovery unit, where the staff restored my faith, they were just magnificent.

The diagnosis was eventually changed to vascular dementia, triggering a further breakdown for me, and the realisation that we were now looking at a permanent nursing home.

To cut a long story short, after a further year, she is now in a superb care home where she is cared for superbly. Of course, once that happened, the weight of the years of worry and fear should have dropped off my shoulders, but a severe attack of survivor guilt left me sleeping only fitfully, dreaming of suicides and drowning, of maiming my wife and countless other cheery things.

My GP stuck me on some new meds, and they have done their job… three months on I am sleeping well, not having the nightmares, have regained my self esteem and self confidence and am now clear that nothing I could have done would have changed the situation we are now in, and that I have nothing to feel guilty about. I am comfortable with myself and am now starting to live my life fully, and enjoying myself again.

So, I don’t have the day to day care issues so many carers bravely face every hour of every day, I have no worries about my wife not having the best possible treatment… what could be wrong with me now?

Well, I’ll tell you. At present I visit twice a week, I never know if she knows who I am… she hasn’t uttered an intelligible word for 4 years now… she spends more time looking around the room and wandering off to other residents than sitting with me.

I have no idea if she gets anything from the visits… there is no spark or hint. She is never seems thrilled to see me, never seems disappointed when I leave, in fact never shows anything to give me a clue if there is anything behind the blank lifeless eyes.

As I have always said she is my wife, I still love her, I still want to be with her, and if I don’t visit her at least twice a week I feel I am letting her down… I won’t do that. But, when I do go, if I’m honest, I get no pleasure… I just feel upset and lonely, missing her more than when I am not with her. I hate to see her living this sort of life, she should be with me, at home, enjoying her gorgeous grandchildren, who she doesn’t really know.

Thing is, she may be happy... I don’t know. I think she is relatively happy, the staff members think she is relatively happy given the limitations of the condition… I can only hope that this is right.

But there is my dilemma… I won’t let her down… I know she wouldn’t let me down were the positions reversed… should I go more often? Less often? Stay longer? Stay shorter?

I know no-one can answer this for me, but I feel more at peace having now typed these thoughts out. I have to come to my own decisions, as does everyone in this sort of position…

Pratto

Another truth has crystallized in my mind tonight as I start to put pen to paper, well, finger to keyboard at least.. it has been a while since I wrote anything, I only seem to write when I am down, or when someone has seriously pissed me off. So, which is it today… I have been seriously pissed off, so although this is pointed about one person, it applies equally to thousands around the world with the same traits, I am sure you will have met them somewhere.

So, what is the theme? It’s positivity basically, It maybe commitment, it maybe integrity… maybe even a combination of all three. Whatever it is, it is damaging..

I spend a lot of time working towards supporting carers of people with mental health issues, I know from experience that there is precious little out there for them, but there is more than you would imagine if you know where to look.

What really gets me down, therefore is individuals who prevent those of us who want to help from doing what we want to do. I don’t think anyone will think that is an unreasonable standpoint, surely not.

So the question is, how and why do people actually prevent people like me from achieving what I want to do? You may well ask…

Firstly, I got involved in this work when my wife and I received such appalling treatment at the hands of the Mental Health Service… I don’t sit back and think “that was poor” and moan to friends, well to be fair I do that, but I take the matter up with those who can influence things… in a word, I complain to the people concerned and those above them who can change things.

In this case I took that as far as it would go… to the CEO… ands as I still got no satisfaction, I kept pushing despite his warning about it adversely affecting my wife’s treatment… I told him it was so bad anyway it couldn’t… he didn’t like that!

However, one thing I always did was to say that we couldn’t turn the clock back, we couldn’t change what had happened but we could change things for the future.

I was invited to become involved in a project about training the staff, and from that I started to develop relationships with staff and management, and was invited into all sorts of other projects, gradually becoming involved in projects with a range of third sector support groups, and gradually with like minded people have established a number of other projects, through these efforts I believe I have positively improved the support and service for carers.

Now this is all very positive, and what I want to be, but sometimes in a group you get individuals that don’t think they should engage with the service providers… though how the hell they think they will influence them like that I haven’t a clue.

You can sit in a meeting, make a suggestion to launch an initiative to improve something, to give carers something and colleagues will say yes, that’s a great idea… then our negative person will rise from some sort of wallowing stupor and announce with great confidence and assurance “no it will never work” and one or two will think he must be right. So you ask the question “why not” and the answer is inevitably that you wont get cooperation from the people you will need to talk to for the support. It’s true… our negative element, lets call him Pratto, wont get the cooperation, for one of two reasons… Pratto is not really committed, he is in it for what he can get out of it, to tell his mates at the pub he does good works but is scared to actually put him self about to actually do anything. The other reason is that Pratto is simply one of those people who expects everyone else to do things, never has an idea himself  but always knows why ideas wont work… never valid reasons, but always reasons.

I have worked with a number of Pratto’s in the third sector… I have just left a group that seemed to spawn them. I suggested a project… was told it will never work without the support of the matrons. I explained that I had the previous day met with some of the matrons, outlines the project and had a huge buy in from them… so, objection overruled you would think. Not if you have a Pratto it isn’t… Pratto will tell you that you will never be able to tralk to the matrons… and staggeringly the weaker members of the group will believe him. I have worked with Pratto for too long… there is no place for thease people.

I met one at a training session, aimed at illustrating to the staff how they are perceived by their service users and carers… superb positive project and superb training session. Then Pratto showed her face… the topic was n aspiration of encouraging a service user or carer that things can improve for them, not will – can. Pratto delivers CBT for a living,  and the pronouncement to this aspiration was as follows “we cant do that”. Of course the trainer asked the obvious question “why not?”. Of course Pratto had the answer ready… “they may go out tomorrow and break both legs, that’s hardly getting better”

Now, I could have sat back, most did, and either ignored this or even agreed with it. But I didn’t. I had to challenge it. To be honest as a statement it is probably too stupid to deserve being noticed, but I challenged it, and concluded “if I were undergoing CBT with you and you displayed that attitude I would get up and walk out… and never come back” Its true, I would do just that. I have undergone CBT and believe me, for me it worked.

If looks could kill Pratto would be on a murder charge right now. I was delighted when the lead trainer said “and quite right to” then proceed to demolish Pratto for her negative threatening body language… all Pratto’s display a negative and/or threatening body language.

So, I have clashed with my Pratto… life is too short to persist with these people, so I have gone solo, well, not really solo, I have left him behind and will work freelance with likeminded friends and groups, and do you know what… we are starting to achieve so much… and having some fun in the process.

I would recommend all  of you… if you are involved in any support groups, or any groups at all, look at your colleagues… I bet you will have a Pratto… get rid of them, by whatever means you can, get rid of them and things will go better.

If you don’t see one in your group, look very closely at yourself….

Support groups need all the help they can get, but Pratto is no help. Pratto is always, but always, a destructive handicap. I have no time for him

Launch of Carers Charter

As a Carer, like so many of you, life is often hard, often isolating, and we all know exactly why everything seems so bad. It is, therefore A privilege for me and my colleagues to have the chance to become engaged with the service providers and to have our voices heard by those who make the decisions, deliver the service.

Clearly not every carer can sit around the table to discuss things, so I take my role seriously, representing the thousands of ordinary folk who are going through the same difficulties I’ve faced. I feel it is important to draw on personal experiences to define how we would like the services shaped to help is cope.

There Carers Charter is the product of the thoughts of a group of people from a range of backgrounds and organisations, the one thing we all had in common was that we are all either carers or work to support carers, so we all know the problems faced, albeit from a different perspective, which has allowed us to approach the subject very openly and from all angles, leading us to what we all believe to be an excellent Carers Charter.

The launch event at County Hall was a huge success, with a huge degree of involvement and engagement between service providers, commissioners and carers. I am very optimistic that the spirit of the event, so positive and mutually supportive, will develop over the months and bring about a far more patient/carer focused service than many have perceived in the past.

The whole Carers Charter package is proof indeed that for carers and support groups to fully engage not only with each other but with the service providers is the way to achieve the most effective service for all concerned, and does , I believe signals the end of those groups and individuals who’s only concern is to condemn and criticise… and that is good news for carers.

Now we have the charter, lets move forward, continue to engage and develop between us a mental health service to be proud of, to be a role model.

Positive Good, Negative Bad

Anyone who knows me will know that I have been one of the harshest and loudest critics of our Mental Health service, the Leicester Partnership Trust, (LPT) over the last 7 or 8 years…  there is still a great deal wrong with it… but there is a change in the wind.

I have made many criticisms, valid criticisms… never invented a story, every criticism I have made is true, during most of the time we have been in their care you don’t need to invent stories!!! However…my experience is not the whole story… no one persons’ experience is ever the full story.

I want to redress the balance and talk about press freedom and how it is not always the positive force that we see it as.

So, for several years I fought the LPT and pointed out their shortcomings, eventually, partly due to changes at the top they started to listen, they started to understand.

I am now in a privileged position where as a volunteer, I have been invited into a number of their training and development projects. Throughout the last two years we have had absolutely first class care and support within the trust, the care and treatment provided at the Willows unit has been as close to perfect as it is possible to get, the staff there are simply wonderful. I have found that being able to share and to compare and contrast my negative and positive experiences is proving effective in informing future directions and styles within the trust. 

I am absolutely delighted to give my time to work with the LPT. I find that there is a huge commitment to understand where things have gone wrong in the past and to not only put them right, but to take the service up to the next level, and I know that with the commitment and enthusiasm shown within the trust they will succeed magnificently.

Not only do I have a personal involvement with the LPT, but I am delighted that the two Carer Support groups I represent engage fully with the trust to work together to bring about improvement and development.

I believe it is the right way to bring about improvement, there are many carer and patient support groups, all working towards the same end, all with their own speciality and angle, and it is important that we all work together, we can only progress if we work together towards the same end, support groups and service providers working together in harmony to bring about the improvements we all crave.

This is where I feel the obstacles to the improvement start to show. We meet so many carers and patients in our roles who have disengaged with the LPT because of previous bad experiences, anecdotal evidence and of course articles in the press.

Local press does influence public thinking, whether consciously or subconsciously is maybe debateable, but it happens. If you look back over the published articles over the last few years, all you will see is negativity, anger and blame. Yes there have been a number of tragic situations within the LPT over the last few years, many of them ending tragically in death, and in many cases some level of blame lies with the performance of the LPT.

It is important that these incidents are fully investigated and evaluated; it is I believe important that these stories are in the public domain and that lessons are learned. That staff failing in their responsibilities are taken to task and dealt with appropriately.

However, as I said earlier, this is not the whole story, although if you read the local press you would be justified in thinking that it is. When the local press have the stance that they will only publish articles where they can condemn the LPT and it’s management… they will not publish the countless success stories, not will they balance the negatives with the many triumphs within the LPT, they will not take interest in the many positive initiatives within the LPT to ensure improved service.

One reason for the need for the tragedies to get into the public domain is that it will it will stoke the drive for improvement, the trouble is if the same press refuse to acknowledge the positive initiatives, the public will not become aware that there are huge steps being taken already to improve.

Even more disturbing is the attitude within a number of our fellow support groups. We are keen to engage with the LPT and other service providers, and they are keen to engage with us to ensure that they fully understand the needs and requirements of carers and patients.

Sadly, some of the other groups do not have this spirit of engagement, they simply want to criticise and condemn the Trust.. I really hate this mean spirited negativity on the part of a couple of well known support groups whose only agenda seems to collate lists of problems to browbeat the LPT

I recently attended a meeting with one such group, the tone of the meeting was appalling, so negative and damaging. They took a positive guidance and advisory document that the LPT had put together with the help of carers and patients and wanted to use it purely as a tool to criticise and condemn, with no intention of offering any solutions, alternatives or stating what is needed.

Their only plan was to visit the LPT and list everything that was wrong, in their eyes, so they could tell the LPT how poor they are.

If this misguided group of luddites had engaged at any time, they would have been very aware that no-one is more aware of the problems than the LPT itself, they openly admit there are problems and are making tremendous strides to improve things.

Even within my own groups there is a residual element of this attitude, there is a negativity that continues to threaten our chances of moving forward, an element of living in the past that says “they did this 10 years ago, so it still happens now and will never change”

This negativity, at group or individual level, is damaging. It damages the people concerned, it damages the efforts to improve things and, most importantly, it damages the carers we aim to support.

I have seen so many carers burn out, youngsters burnt out before they’ve grown up, older people old before their time, carers in distress and struggling simply because they are carers and not being supported. It is my goal to work with support groups and service providers to make life for these people better, more supported and less isolated. I believe that the negativity of the press, and of some of these o called support groups and individuals is ultimately harmful, because it stops people seeking the help they need when they need it. I would honestly ask all of the support groups who promote negativity and gloom, and all of the individuals in so called support work who are there to talk about it, impress their Womens Institutes and Golf Clubs with their Charity work, but wont actually do anything constructive, wont even support colleagues who want to do positive things to help to just fade away into the obscurity they deserve, find something else to sit and pontificate about because the are frankly a waste of space.

So many people have disengaged from the LPT. The negativity expressed in the press and in the groups I have highlighted carries into the community, it destroys any faith the carers out there may have in the service offered and doesn’t allow them the encouragement of understanding how much improvement is already underway.

Throughout this, I have referred to the progress and support within the LPT… of course they are not the only service providers in this County, I just wish I could speak as enthusiastically about our Social Services, sadly I cant, they are still locked into the bad old days and show little or no commitment.

Many other teams at County Hall are doing wonderful work within the field of mental health support. They are showing a level o f compassion and commitment which, like the LPT, has to be admired.

I would love to see all support groups and local media show the truth, yes there are major problems to overcome, but there is a huge amount of work in place to do just that, improvements are coming through everywhere, the LPT and many teams in County Hall should be proud of their efforts, and should have them broadcast loudly, not face the continued carping negativity so prevalent.

Now, next job is to work on the Social Services… I hope we can between us turn them round as well.

LPT Getting it Right

Hmm…. Around 18 months ago, most of my conversation was dedicated to slating the Mental Health service in Leicester (Leicestershire Partnership Trust – LPT), after all we had had some really bad experiences with them in the past, and the previous two years in their care had set new heights in terms of incompetence, dishonesty, stupidity and downright negligence… levels of horror so high that you would think that they actually studied long hours to see how many ways they could find to abuse, insult, neglect and antagonise their patients and their families… and don’t think that this is a maverick view held by just myself… from my experience a staggeringly high percentage of the people in their care share my views… the number of patients they allowed to escape or worse, take their lives whilst in their care hardly reflects to their benefit!

What did I do about it? Did I sit back and say “it’s just the NHS, it’s the way they are”. Did I hell… I kicked, screamed, fought and campaigned until something happened. Despite being told by the then CEO, that if I continued my complaint it would adversely affect my wife’s treatment, (I told home it couldn’t possibly be any worse) I pressed on, holding my ground against idiots at all levels of the LPT…

The thing in my favour I think, is that even then I understood that you cant take the clock back… what had happened to my wife and I happened… whatever I did it could never change it, the harm was done, and I always included that statement in my complaints, whether spoken or written, however much I ranted and cursed at the trust, and always said I wanted to help them become competent and caring.. I wanted to engage with them to bring about improvement… I didn’t want to see others go through the crap we had gone through.

I did however want three heads on plates.. I got one, one was investigated by the General Medical Council and the other transferred… I still want these two to accept responsibility for their lies and callous lack of care….

However, my complaints led me into uncharted waters, as the senior management changed, to be replaced by quality people who actually give a damn, there was a tide of change flowing across the Trust management.

I was initially asked to join a project called “Improving the Experience” which though focussing initially on the Community Health Teams, is designed to resensitize the staff to the more humane aspect of nursing… I got thoroughly involved in this project, got to know many great people within the Trust Management, and learned to understand that they understood and accepted how awful our experience had been, how awful so many peoples experiences had been, and I saw how keen they ere to improve and get it right.

This gave me my first kick of encouragement and confidence for many a year.

As the project continued, I got to know the staff well, and as my regard for them continued to rise, it seems their respect for me rose in parralel… and before long I was “the usual suspect” when it came to supporting and helping the LPT as a carer representative.

To cut a long story short, I was invited to join a small committee reviewing how the Trust handled complaints… hopefully  damn site better than they handled mine, and again the will to understand and improve was immense.

From there, with my two carer groups, we approached the LPT with an offer to formally support them and to help to regain the public’s confidence in them.. and out of this project came my involvement with the Recovery College, a new initiative aimed at providing recovering patients a chance to learn life skills to enrich their lives and cope with their conditions. A truly wonderful initiative, which I am thrilled to be deeply involved in from the beginning.

I have also now got into an additional project, setting and defining patient clusters (awful name) to ensure that patients are given the most appropriate type of treatment throughout their time with the LPT.

I am also now working with the County Council on various Mental Health projects as well as some “one off” events with Time to Change, Centrica, Rethink Mental Illness and Nicky Morgan MP.

I also work devotedly with my two groups, Carers’ Action and Labelled, where we take a pride in working with the rust and service providers, advising, helping and supporting, and always putting the interests of our carers first, always working to be sure the service provider know what carers want and need, and working with them to provide it.

I work with th groups to engage fully with the service providers, we have seen the benefits coming through already, there is a definite improvement in the attitudes and performance within the Trust, generated I think by the new management team, which is slowly sowing dividends at all levels within the Trust.

I have also been to meetings with other groups purporting to support carers, but I cannot support them, their attitudes are disgraceful, even now, all they want to do is to gather ammunition to criticise and condemn the trust. They have no understanding, nor indeed interest, in the marked improvements we have seen, nor the brilliant initiatives in places and working to fully revolutionise the service, to fully embrace the needs of the patient and carers and to provide fully holistic treatment to everyone involved in mental illness.

These moves are so positive, they promise so much to ease the burden of carers that I can only step back and admire what the Trust are now doing.

In my career supporting mental illness, I have worked with individuals who it sickens me to think of as being mental health campaigners… they are negative, spineless fools who want only to impress their local womens institute or golf club, some are so old that they just aren’t living in this world, they cling desperately to the Uriah Heap principal of campaigning… ie ask a question, but only if it wont embarrass the service provider and not ask for an answer.

Even worse are the groups that persist in allowing these pathetic specimens to dominate the group.. the are a number of these groups locally, and I will continue to support the LPT in their efforts against these useless destructive bodies as long as they continue to launch and develop the fabulous initiatives that they are currently working on.

I will not name the individuals or groups here… but anyone who knows my campaigning stances will know exactly who I am talking about, if you don’t know, ask me privately, off the record, I may just tell you.

So, I know the LPT is in very good hands now, the improvements will not be seen at ground level immediately, there is a culture of wrong to be overcome, but the LPT is going exactly the right way to change things, and I for one will celebrate with them when the lot of the carer is improved by their efforts.

Here I will name names… after the crap we took in the LPT a few years back, I had no hope for them ever giving a damn, let alone getting it right, but through the fabulous efforts of a large group of people, not only is the a huge compassionate heart within the Trust, but a huge will to get it right, I would therefore like to thank a number of people I have, and am, working with, for their commitment, compassion, and above all for what they have done for me, as an individual, to raise my spirits and self esteem… so I toast John, Paul, Richard, Sam, Becky, Nicky, Kate, Terri, Debi, Chris, Dawn, Mark, Jules, Girish and all of those whose names I have missed for the support, kindness compassion and help and for giving a damn and helping carers.

Yes, the LPT is now in good hands.

How was your 2012... this was mine

So, how was 2012 for me… good question, but me being me, there just isn’t a simple answer to it. The curates egg has nothing on my life over the last few years… neither does a roller coaster. They model their styles on my life. However… the current mood lives and breathes optimism and positivity… but lets not get ahead of ourselves, it wasn’t always thus.

As the year 2012 crawled malevolently over the horizon it looked set to top its predecessor for misery and despair… and to be fair.. made a damn good job of it to start with.

On January 1^st 2012 I was in a dark and lonely place, at the end of the previous year I had been diagnosed as having Diabetes2, had been made redundant and learned that my wife would never be well enough to rejoin the community, to come home, she was to be in hospital, or a home, for the rest of her life.

So, there was not a lot it seemed to look forward to.

I consider myself reasonably responsible, so I wrote to the building society to say I was worried that I would soon be unable to pay my monthly mortgage repayments, and asked if the was anything that could be done.

They were full of compassion, the curt response was simply write again when you are in real trouble.

How was my mood… I was having to sell the family home because I couldn’t afford to stay, which made me feel like a total failure… as I sat in the house all I could see was my wife having those awful fits and seizures that the Mental Health team didn’t think were worth them bothering with. I saw no hope of getting a new job, and once the house was on the market viewers were not impressed by our bookcases or decoration… so with a heavy heart I set out to redecorate top to toe… didn’t want to … hated doing it… but it had to be done.

At this time I was totally lacking energy, I couldn’t bring myself to do any cleaning… that had been true on and off for a few years in fact… couldn’t see the point of anything and was once again withdrawn and inward looking. My social life was again nil… I darent drive at night anyway because the oncoming lights were too tempting for me… yes, I was that low.

It was at this time things started to happen, things had got so bad I either had to give in totally or rise, phoenix like, from the ashes of my former life… and I didn’t care which.

At this time I was thinking of quitting the carer group I was working with… for two reasons. One is that I was totally hacked off because they were so ineffective, so luddite, so cowering and humble that they were, in my view, actively making things worse for carers. Also at this time a silly mistake of mine, tagging an email to a friend as well the management group… We all make mistakes… led to so much vitriol and stupidity by two particularly pathetic members of the group that it almost destroyed the group.

I was disappointed that the group seemed to want to bend over to appease these two twats… they didn’t mind that they were stopping us from doing any support work, and spent hours talking about how to most effectively grovel.

My counsellor at this point kept me going, and I had started to develop a much closer friendship with an individual I had met in the carer support groups over the previous years, this friendship inspired me and I was introduced to a brand new voluntary organisation, Labelled for young carers.

It was at this time I went to a ward round at the hospital and learned that my wife had vascular dementia and that deterioration would continue to be quite rapid. A later ward round brought the bland announcement that her life expectancy was seriously restricted…

During this period I was in my darkest moods, at my highest despair and simply had to take time away from the group or I would really have done something I would have regretted… had I survived…

I was however again writing to try to clear my mind… this time I wrote an article about Labelled and was fully adopted into the group… this was a turning point…

I started to get involved with the group, their youth and vitality grabbed me by bootlaces and pulled me away from the precipice… things were improving.

Things at Carers Action were getting no better, I gradually went back to the group, but the issue of the two twats was still paramount, we were still doing nothing…but I thought id stick with it, though doing as little as I could get away with.

Then a strange thing happened… I was painting the living room ceiling, the penultimate room on the agenda… I was hating doing it, I had loved the old decoration and now it was all just magnolia… when there was a knock on the front door.

Any excuse to stop painting, I would even have chatted tot the Jehovahs witnesses.. but I recognized one of the men at the door.. our old insurance agent, hadn’t seen him for 15 years or so… but didn’t know his friend. Anyway, in they came and we chatted, I explained about my wife, and why I was selling the house.

They other guy said he may be able to help… he was a financial advisor. To cut a long story short, he was able to buy out my three personal pensions, get me a 25% tax free lump sum and an immediate pension which was more than the sum of the three was projecting had I left them untouched until retirement. Add that to the DWP deciding to pay me a pension rather than unemployment benefits and I was able to pay off the mortgage, put a significant sum into a savings account, reduce my monthly outgoings by a huge amount and end up better off than I was when I was working.

This off course was a huge relief.

I took to retirement readily. Now I knew I wasn’t going to have to move or get a new job, I was able to devote myself to voluntary work and make a play for the Chair of Carers Action.

All this time, with the encouragement and support I was getting, I was growing stronger, still missing my wife terribly, still grieving daily and still sleeping badly, if at all, but generally I had accepted things and was starting to live again.

As the year progressed my association with Labelled developed, their support helped to develop my self esteem… I started to believe.. I took a more positive role in Carers Action again, chaired a number of meetings.

Then on a personal level, the autumn brought some fantastic developments, I joined an on line carer support group, feel I was quickly accepted and have been told that my positive approach and encouragement had inspired a lot of the members, I have become firm friends with so many of them, so many new friends world wide, and so much encouragement and support. It makes me feel good about myself again.

I have other friends, online, who I have known for ages, their stories make me feel very humble, nobody should go through what they have gone through, and are going through, yet despite it all we are good friends, and these people still have time to care for and support others… they have been real inspirations to me, have helped me keep going and my heart bleeds for their situations.

I love all of these people, they bring me comfort and support, they bring me affection and real friendship. I am honoured to be trusted to share their stories and to call myself their friends.

Even more, my ramblings in this blog brought me a message from an individual who had been my closest friend in our scuffling days, and we hadn’t met since around 1977… but through this blog we got in touch, met for coffee, and now meet weekly… to crown it, we also traced another dear friend from those days, and we all now meet regularly…back in the day we drank copious amounts of Newcastle Brown Ale, talked of wine women and song.. nowadays we drink varying amounts of coffee, discuss our ailments and have to stand periodically to relieve the knee cramps!!! But the friendship is deep and unaltered.

I have also renewed another dear friendship, from maybe 10 years ago, which is now flourishing and will I hope continue for many more years…

So, as I leave 2012, I have become Chair of Carers Action, which we have kick started into a proactive organisation genuinely supporting carers, I am co-CEO of Labelled and am fully devoted to both groups, as well as now working on a host of projects with the LPT (Leicester Partnership Trust) the Mental Health Service locally.

I am getting real fulfilment from this voluntary work, although I am doing long hours, I welcome everyone, I am really thriving and revelling in the work, and developing friendships within all of the delivery services.

I am so thrilled to have forged these wonderful friendships through the on line support group and hope to develop them through the year, the renewed friendships, all of them, have made me feel young again. One of my biggest regrets in life is losing touch with people who meant a lot to me, in the last two years I have been privileged to have rekindled 6 of these old friendships, in each case, the conversations seemed to more or less carry on from where we had left it all those years earlier.

The guys at Labelled… well, they were the catalyst… without their support and encouragement I would not have really started on the journey I have been on this year.

So, my resolution, once things sorted out, was to finish all the work in the house, make it mine, and to start a new life, on my own, in the new year… 11 days in, it seems to be going so well.

However good I feel about it though, I am still racked with guilt knowing that I am going on, developing, happy while my dear wife sits in a twilight zone between life and death unaware of what is happening around her. I still feel the loneliness of loss, strangely more so when I am with her than at other times… and the anguish of seeing her in this dreadful unsympathetic tragic condition. Believe me, it hurts more than I can say… but what I do know is that were it me in that state I would want her to make a new life. I believe I am doing the right thing… but it is not easy, it is emotionally tearing me up, but thanks to the wonderful support and friendship I am now honoured to share, I am getting through it and am now doing pretty well in life.

I have referred to many people in this piece, I have not named names because I may miss one… I believe everyone who knows me and reads this will know where I am referring to them.. though at least one I know wont believe I feel that strongly about her…

Let me say, I have two friends left who have come through all of this with me, have always been there for me, have been the best friends a guy could have… and now I also have so many wonderful new friends, and wonderful re-found friends, that I feel rich beyond measure.

To everyone who has supported me and encouraged me through this turbulent year, I offer my sincere and unqualified thanks and respect… I may not tell you to your faces how much I thank you and love you… but I do.

So, 2013 starts with a positive mind set and looks like being a good year for me… you may disagree, but I think I deserve a good year now.