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Monthly Archives: December 2015

Today Elizabeth and I have been helping someone who we have known for many years (an elderly lady who is now very disabled and living at home).  She cannot walk, speak and has to write everything down on pieces of paper.  A few weeks ago I bought her a board to write on but she has gone back to writing on pieces of paper again.  Today I met with her social worker as a new agency has just taken over and it would appear no information has been passed between existing and current agencies as far as access to money is concerned so carers have no money to buy milk, bread and essentials and then I get a call that shopping is required.  There must have been previous access to funds prior to this agency taking over as there was never any problems like this.     Because there is no money to buy shopping this had led to a situation where there is no milk, bread and basics in terms of food.   Myself and carers have had to go out and buy food etc more than once.   It was attempted by the social worker today to try and take her to her bank but there was no wheelchair or transport arranged and I had to drive to a neighbouring area to pick up a wheelchair.   She refused to go in the wheelchair and I was handed another shopping list of things that were needed.  After I had done her shopping I took Elizabeth home and had to go back with the shopping and food I had purchased for her.

My thoughts turned to Elizabeth who has had nothing since nineteen months having come home from care but then that is understandable as she has not wanted to speak to the social services team as they have been so nasty behind our backs but today we saw another team of social services who I have previously had good experience with in their support for my father who had Alzheimers. Social Services have now taken control of the matter but it is not a good situation where you are asked to do shopping and there is no means of reimbursement right before Christmas, especially when there is no support for the person you care for (Elizabeth) which means expenditure falls on my shoulders.  What is happening when there is a Better Care Fund.

I think I have been blacklisted.  I always used to hear about all events going on at the local carers centre but now hear nothing and am no longer invited or informed of their parties or events or even receive literature.   They were the first people I turned to when Elizabeth came home from the care home but like many organisations, they rely on funding and I suppose this is why we never hear anything any more from them like we used to.

I cannot really sum up any enthusiasm for Christmas this year and have struggled to plan and look forward to this occasion as I once used to.    Every Christmas I take dinner to the elderly lady and I think that Christmas is a very sad time for so many people, especially those you who are elderly and alone or under mental health care and isolated for instance.  At one time, I had my father who had Alzheimers also to visit and cater for at Christmas.   I shall be thinking of those who are deprived of being with their families (and I know several such cases under MH care)  I would like to feature such cases on my website where young people are being long term incarcerated for many years and some do not get out yet many cases are not cases where patients  are violent and a threat to others.    I remember one year when Elizabeth was brought home a week or so prior to Christmas  Elizabeth was  flanked by two nurses whilst at Cambian like a prisoner.  It took hours to drive from Wales all the way to my home in London and because of bad traffic on the roads she only had about two hours at home before they had to set off back to Wales.  Now I can see that the rest of the family were treated differently and were granted unescorted leave and extra leave compared to me.

I am very happy now that Elizabeth is back home as also when someone is away from the local area there is no support  or having to stay in overnight accommodation and this can mount up. I just wish that something can be done for the other cases so that young people are not deprived of leave with their families at Christmas which I think is a breach of human rights and this is  going on in the UK today not being reported in the press.

 

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You pay their wages.  But the so-called public servants who run councils, the NHS and police are uniting to keep you in the dark about their greed, incompetence and corruption” A brilliant article by the Daily Mail featured on 10th December.  See below:

http://www.dailymail.co.uk/news/article-3353660/Public-sector-chiefs-unite-attempt-crush-FOIs.html

I can certainly identify with this and yet they say there is no money but when no one bothers to attend any overview and scrutiny meetings then the public will always be kept in the dark.

The first half an hour was held in secret and I was asked to leave.  Such meetings include Church of England Diocese and Catholic Diocese) –  I have just seen “vacancy –  (parent Govenor Representative) –  shall I apply?  and I’m pretty sure I would be turned down like I have been when I applied to NICE and just recently The Royal College of Psychiatry.  One of the most disturbing things mentioned is Point 3:   EXCLUSION OF THE PRESS AND PUBLIC   – I am a taxpayer and a Scrutiny Meeting should be as per the title in my opinion – (open, honest, transparent).      To emphasise further under the heading of EXCLUSION there is a sentence “To consider, if necessary, passing a resolution under Section 100A (4) of the Local Government Act 1972 excluding press and public from the meeting for the item of business listed in Part 2 of the Agenda on the grounds that it will involve the likely disclosure of exempt information as defined in those paragraphs of Part 1 Schedule 12A to the Act (as amended by the Local Government (Access to Information) (Variation) Order 2006), as are listed on the Agenda (Please note there is a restricted Part 2 agenda).   

The main thing I was interested in was the Better Care Fund as, in nineteen months since coming home from the care home, Elizabeth has had nothing provided and now there is someone helping and this person is doing miracles with Elizabeth.  On a new diet of mainly vegetarian/vegan food she is losing weight, she is being taken out places as Elizabeth is so disabled now she cannot go out alone as she is too afraid.  £3.8 billion is allocated to this Fund and there is detailed information as to how this is made up and distributed.

Getting back to the Daily Mail article it says “senior managers from across local government, the police, quangos, hospitals etc. all seized upon the chance to demand a draconian crackdown which could introduce fees for making a request.  Well I have to pay fees for information.  So Jonathan Isaby of the Taxpayer’s Alliance comments “Who do they think they are” and how disgraceful it is to be making the misleading and emotive claim that making information available to the public means less money for looking after the elderly and vulnerable.  I agree with his comments.

In my local area we have coming up soon a Budget Consultation – Have Your Say   “Government cuts and an increase in demand for Council services from a growing population means that difficult decisions will have to be made about the future of many Council services.  This is in addition to £118million savings made since 2010 – efficiencies alone are no longer enough.  We want to hear from you – tell us what’s important to you, your family and community. You will be hearing from me.  I  feel like putting the link up here right now but I am awaiting a response to my letters first.  As I am limited for time I have decided the best way forward  a letter copying in everyone at the same time.  The date the Budget consultation closes is end of January but I have already started to write the most important letter I have ever written and I will keep you informed of the outcomes.   I could go on in depth with my comments on the title of my Blog and Budget Consultation but in short I would state:   The Council is already saving money.  They have saved over £60000 a year + not having to provide a care home and even more money on not having to pay for a CTO when it is not in the slightest bit necessary.   They need to put the bulk of this money on the failing healthcare for mental health patients and the weak/vulnerable/disabled in my opinion but this is not happening.  Instead they are saving a fortune.   In nineteen months nothing but now there are more than one team involved as others have been helping and supporting Elizabeth whilst I work.   I have also been providing a personal trainer but there is no help or support even though they are supposed to provide something.   As I can see thousands have been spent/wasted on taking me to court.  Even more has been spent on private sector care for nearly three years and a hospital in Beckenham.  The bulk of the money goes on over prescribing and wastage on drugs that do not even work.   I have proven through metabolism tests in Holland that Elizabeth cannot metabolise drugs yet they still insist on giving Clozapine at a high dosage rather than reduce them.  The elderly lady I see from time to time has been prescribed lots of drugs she is supposed to take but she is only taking 1 of them as she cannot swallow these enormous pills.  What a waste of money and  I have quite rightly complained to her GP about this unsatisfactory situation.  If £2500+ was spent on court even more money must have been spent on the independent Psychiatrist’s report plus his attendance at my home.  Several more thousand pounds on top of the figure of £2500.  I will definitely be sending my comments to the Leader of the Council very soon.

In my local paper there is an organisation who support the disabled and they apparently held an event recently – wish I knew as I would have attended but basically it is noted that the number of people in the meeting room reflected the level of concern however they should have gone to the Scrutiny meeting in my opinion too.  Concern was voiced over the Council’s cuts and Government Policies.

On a positive note we are seeing huge improvement in Elizabeth now she is on an improved diet.  She is being taken out regularly by someone who has volunteered to help and who I would like rewarded for his huge effort.

Looking forward to Xmas only a couple of weeks away now and it is about the only occasion the family  get together as others are very busy.  We are inviting in neighbours this year.

The weekend was so busy as I went to visit a friend who is an elderly lady and I discovered she had hardly any food so I then to do some shopping  for her.

On Sunday I went to visit another friend who was on a mental health ward but has since been discharged.  I was shocked at the level of security in that hospital.

There is so much to think of this time of year. There are no longer young children in the family it is not the same any more.

Christmas can be stressful but extremely sad for some people.  On Christmas Day I take dinner every year to the elderly lady.  I shall be thinking of those in hospitals, those who have no visitors such as mental health wards as they are restricted and treated more like prisoners.    Elizabeth is very lucky as she has a team of people who voluntarily help me as there is nothing given in the local area.

I have put up two trees in the living room and it is starting to look more festive but I would like to see other parents united with their sons/daughters who are on stuck on MH wards and denied the opportunity to spend time with their families and I know of several. cases where human rights are seriously being breached.

I have joined the Human Rights Group Liberty and I hope to bring to everyone’s attention some most shocking cases I am touch with.   I am keen to help eradicate such abuse that is going on within the UK and will be keen to assist Liberty in this respect.   Looking forward to helping in any way I can.

 

 

Last year,  following the case of “Deprival of Medication, Community Care” I was taken to Court of Protection at short notice, which was very traumatic and stressful for Elizabeth and myself.   That was over a year ago now and the outcome was that she could remain at home and had capacity to decide on this herself.     The reason things came to court was Elizabeth’s reluctance and inability to effectively communicate well with the team and she did not want to speak to them which I feel was quite understandable.  She had been in the most coercive environments during that three year period.   How can a fair capacity assessment be undertaken when someone is on the verge of withdrawal from the drug Clozapine, having been left without it for several days by a team of professionals who were intent on returning her back to care hundreds of miles away from home and family which they thought to be in her best interest.  In addition, the question of contact was also raised  ie., with whom did she want contact with.   Now that I have jointly acquired the files with Elizabeth I can see the full truth –  how can someone be expected to manage on £30 per week, having been in care for three years or so.  Elizabeth blames herself for this and that she had no food at the weekend.  I do not – I blame “care” that allows such things to go on and expects someone to be able to just get on with everything as they once could have but now on large amounts of mind altering drugs, this makes  thinking quite difficult at times but by that of course I mean every day chores and it is vital that someone on a lot of drugs has the correct nutrition and this is the kind of help the vast majority of MH patients living in the community need rather than maximum amounts of mind altering drugs.

So the Court case ended and we were left to assume there would be a further court case or possibility of.  There was no such thing at all and we heard nothing and then by the end of the year we finally got to hear there would be no further case.    My reaction was mixed, one of relief and my other thoughts turned to Elizabeth – what had been achieved.    She had a report from an Independent Psychiatrist which, apart from the fact she has capacity, this was not a good report in many ways and contained numerous errors which I quite rightly pointed out.

Anyway, you get nowhere by complaining to solicitors who offer a nominal monetary goodwill gesture but it is not the money that is important here it is the principle.    Expenses for Elizabeth should have been the prime consideration and also altering of the report by the independent psychiatrist that contained a massive mistake in terms of “Applicant which I straight away noticed and pointed out to the solicitors.  An independent psychiatrist is appointed jointly by solicitors and Council and I think this should have been corrected but instead the solicitors said that the main thing was that it said she had capacity however I want everything to be correct and 100% accurate as it should be.

The advice given from the solicitors to Elizabeth I thought was very questionable.

Anyway, I thought at least the fares should have been paid and expenses if nothing else as I had to pay for counselling for Elizabeth who suffers from Agoraphobia and was required to attend court on the fifth floor.  So all of this was a huge ordeal for her to go through.    A goodwill gesture of a small amount of money is not a goodwill gesture when the fares and court expenses should have been dealt with in the first place. So, I took  my complaint to the Legal Ombudsman who thought the solicitors acted fairly and that the goodwill gesture was the only thing left to offer.  Typical of the kind of response you get when you put forward a complaint and how a major organisation such as this can protect and take the side of solicitors and does not consider properly the vulnerable person concerned.     I think that this matter should go to the top and there should be transparency within the court system.   I admire Sir James Munby for wishing to see such transparency.   Whilst this may considered a trivial issue I would disagree as, unless there is accountability, nothing will ever change in a system that treats the weak, vulnerable and disabled in the most disgraceful manner.   I have therefore written to Sir James Munby as I think there are many lessons to be learned by this case and reports should be altered certainly not at any further cost to the public but at the expense of who has made such an error and who has refused to do anything about it.   A report such as this must have cost £1000 or even more considering the home visit to meet Elizabeth.      When a report has a major error on it then this should be altered but the Ombudsman disagree.

Anyway, since that court case after sixteen months, Elizabeth is reliant on  close friends and family to take her out.  She has not been given any kind of funding for support, despite the huge local budget in terms of the Better Care Fund, not to mention the saving of £60000, per annum – the cost of the care home.

There is nothing further I can do but await the response from Sir James Munby himself as all vulnerable people should be entitled to their expenses for  court and not discriminated against.   After Elizabeth did not ask to be taken to court.

Last week we had a visit from the Consultant Psychiatrist, as already mentioned in my previous blog and Elizabeth has just received a letter from him.  This letter copies in everyone except for us, the family, despite the fact that Elizabeth has given her consent.  I have made a point today to correct the address wrongly recorded in the heading and to point out that there is not just me as next of kin.  Lets be fair about this – everyone closely involved in the care should be “next of kin” and there should be no favouritism.  The only way I could ever trust a professional again is through Open Dialogue having seen the full extent of what certain people have been saying/doing behind our backs.   I have also written to the Chief Executive and made a point of copying in everyone including the GPs and all the next of kin.

On a brighter note I have just returned from fabulous Belgium (Brugges) and this has been a fabulous break.  Next time I would like to take Elizabeth not just to Brugges but to Geel which I have read so much about.  At least there they have the right attitude to those who have MH conditions.

Elizabeth is currently out with one of the carers today which gives me a chance to catch up on work at home.

Now I am back from a fabulous break I have more enthusiasm and energy to deal with all of this.

 

 

 

 

Today we had a home visit from the Consultant Psychiatrist for the six monthly review but it has now been sixteen months since Elizabeth came home from the care home.

There was no time to contact all my carers as we did not know about this and were not given a letter advising us.  The letter went to Elizabeth but luckily she showed this to me.

Elizabeth wrote down lots of points.

I later wrote down points as well.

So the consultant psychiatrist, prescribing nurse who I have met before and a student turned up at my house.

Questions were asked of Elizabeth who was in favour of myself as mother being kept informed and allowed information from the files.  This has always been the case but some consultant psychiatrists tried to make out she did not wish for me to see the files and there was a lot of coercion going on.  I can see for sure it was the team who did not wish me to see the files but now I have.

Anyway I liked the fact that the consultant psychiatrist had the decency to ask what involvement and how often would Elizabeth like to see the professionals.   One of Elizabeth’s carers came and told the consultant psychiatrist about the nutritional diet and how Elizabeth was going out to different venues and this particular carer is doing a lot to help me right now.   Later on my other carer turned up –  Anyway the meeting did not last long and the main thing that was established was that they were not going to be pushy – I hope not as I can still remember the other team and their behaviour.

Whilst discussions were taking place Elizabeth’s cat, fluffy ran across the room and I could not help noticing that this nurse was not comfortable with the cat being in the room and looked quite terrified.  It was lucky I did not have a Rottweiler.

I asked the consultant psychiatrist a few questions myself.  He could not answer as to why Clozapine Chemotherapy was introduced at the Bethlem.

I was disappointed that this consultant psychiatrist did not recommend a reduction even though she is on a high dosage.  He also could not answer my question as to whether Elizabeth would be expected to take drugs for the rest of her life.  I pointed out recent neurology tests but it would seem the consultant psychiatrist just wanted to plod on with the current level of drugs and I have come across this before.

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