The More it Changes.....

I haven't written much lately.... like many of my friends I tend to write here when I'm upset, angry or just generally pissed off with life... which in recent years means pissed off with the latest outrage perpetrated by the failing and unfit for purpose mental health service.

Suffice to say... my wife is no longer subject to the NHS Mental Service.... she is in a private residential care home in the late stages of vascular dementia...

Other than that situation, which I have had some years to acclimatise to, and have, i think, now come to terms with it.... and with that understanding the guilt i have been racked with has evaporated.....

However... I still work with the professionals... hopefully keeping them aware of the implications of their work on carers and service users alike.... helping to redirect them where necessary... support the good work they do... challenge the shortcomings...

I have met, and meet regularly, many wonderful, compassionate and praiseworthy individuals within the services... however... i also meet and deal with a whole load of totally useless, destructive imbeciles... and frankly... many of them should not be allowed to work with vulnerable people... these people have to be brought into line or removed...

Lets look at a couple of examples....

My wife is in care under a section 117 having been sectioned under the mental health act. The CCG contacted me to arrange a review of her condition to ensure she is still entitled to receive the funding. Well, she is on a section 117... so she is.. whatever their review shows. The point actually was to confirm the proportionate split between medical care and social care...Had I not known that... for the 7 weeks it took to let me have the decision... which also referred to keeping the funding... i could well have had a breakdown... it was stressful enough even knowing the true situation.

I raised these issues with the CCG and eventually had a meeting... with sone very senior officers.... i explained exactly why i felt their performance was a waste of money, inept, unempathetic... they listened intently... we spoke of being open and transparent... of keeping promises....

I was thanked for sharing my story... for making things clear and reminding them why they work in healthcare. The most senior person said "We are all highly trained medically and in social services but we just do not understand the implications of what we do on carers and service users"

For god sake... what sort of twat would take action, impacting on a vulnerable persons life and health, without knowing the implications of that act... these people ar ein the wrong profession if they need me to spell it out... it should be second nature... and they should always know the implications of their actions... i find this situation totally unacceptable... an organisation like the CCG being led with people who say they dont know what they are doing.

Lets look at the Adult Mental Health Service. The reputation is so bad, deservedly so, that doctors don't come... they cover with locums... it would be useful if these locums were trained.

With mental health there is a programme about clustering patients... it is a single central tool to allocate the appropriate treatment to each patient... yet consultants can tell service users "Clusters don't matter.... they are just there to satisfy the insurance comapny"...  Why are these people not trained... perhaps the reason the service falls so far short of the agreed targets... which are set too low anyway.... for patient clustering is that the clinicians don't know the scheme exists, or if they do... what iti is for.

More generally.... what if a dementia patient presents for treatment at a unit which they don't usually attend.... well... if they do... they will not tell the staff they have dementia... no-one will know... serious mistakes in treatment can ensue.... leading to serious illness or even death...

Why is this? The commercial giants who provide the software to the hospitals will not allow links between trusts so that patients records cannot by accessed by other units.... hence a dementia patient will be treated as though they do not have dementia... often with catastrophic effects. Of course this i true of other conditions and illnesses.... dementia is the one i chose to single out

The leaders of our local health trusts agree we are 20% of the way through 10 year project to resolve this issue... 10 years??? Way too slow...

However... ask the Ministry of Health about this... they will tell you it is all in place and not an issue.

There are two options.... they haven't a clue what is happening on the floor in our hospitals... which seems very credible... or they are lieing... which is equally creditable.... which side is you money on??

Which of course brings us to the government... the NHS is safe in their hands... no it bloody isn't.... they are slowly dismantling it.... whether as a deliberate malicious policy or by basic stupidity and incompetence i don't know... i have my guesses.... but, well, what do you think.

i have here listed a couple of points... just a couple... of the many issues currently making the Mental Health Service such a hideous, malfunctioning shambles that no patients are safe in it's care... the service isn't safe in the hands of the government....

What do we do to change it?? I don't know... I have had the same conversation with so many professionals over the last 6 years.... they have done so many surveys to understand what is wrong... but they do sod all about it... it is just tick box strategy...

I have reached the point where i have beaten my head on the wall for 6 years.... what I do can't impact on my wife now... she is past their care... do i really want to carry on the fight.... no... i have had enough of it... i am sick of the lies, the excuses, the bullshit... and in my view it stems from the example the Government sets... perhaps the only way to change the mess is draconian... i probably stop short of violent revolution... but the government has to understand that the decent tax paying citizens detests the demolition of state health care... we need a government who will support the NHS... give it's staff the chance to perform without the beaurocratic bungling crass incompetence of the CCG getting in the way and demanding more and more papers with boxes ticked at the expense of giving care....

And then there is the Office of the Public Guardian.... don't get me started on them... or this will become way too long a read

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.