Archive

Uncategorized

I attended this wonderful conference held at Royal College of Nursing last Thursday along with Sandra Breakspeare (Chy_Sawel) – Cornish for ‘House of Health’  and  another mother, Margarita who also wishes to see the right kind of care provided which unfortunately is not available in the UK.

Following a welcoming speech by Emeritus Professor Tony Butterworth CBE FRCN we  watched a video on the RCN Foundation, including interviews of nursing professionals.

The RCN Foundation is an independent charity set up in 2010 to support nursing staff to improve the health and well-being of the public.

www.rcnfoundation.org.uk

https://scadmin.rcn.org.uk/-/media/royal-college-of-nursing/documents/publications/2014/march/004602.pdf

Professor Tony Butterworth then invited Baroness Sheila Hollins – Emeritus  Professor of Psychiatry; St Georges University of London; Chair, Beyond Words Crossbench member, House of Lords; President Royal College of Occupational Therapists to present her speech on Learning Disability/autism and about effective means of communication with those who have such conditions.

“Listening means paying attention, wanting to understand, to value, to respect, to ponder what the other person says.

Knowing how to listen is a gift which we need to ask for, then make every effort to practice.”

How true this is.

“learning to listen to non-verbal communication, observing pain and anxiety by facial gestures, body positions, sounds.  Baroness Hollins mentioned her son who has Learning Disability/autism.  She spoke of gaining consent without words, to watch for  changes in behaviour and how attention should be paid to environment/comfort/safety and to make necessary adjustments in order to dispel fear and gain trust.

Baroness Hollins spoke of STOMP (Stop over-medication of people with Learning Disabilities).

http://www.challengingbehaviour.org.uk/learning disability-assets/stompfamilycarerperspective210517.pdf

  • Improve understanding of non-drug treatments and support which may help.
  • Make sure people only receive drugs for the right reason and in the right amount.
  • Improve understanding of when they should/should not be used.
  • Empower people with learning disabilities, autism or both and their families with the right information and support.

http://blog.rpharms.com/england/2016/06/02/stop-the-over-medication-of-people-with-learning-disabilities/

https://www.england.nhs.uk/2016/06/over-medication-pledge/

http://www.bbc.co.uk/news/health-33526166

It is a difficult campaign – there is no evidence that giving drugs helps

The drugs have not worked for Elizabeth.

Evidence for pictures is strong –  illustrated books re communication:

  • Supporting understanding through pictures was found to resolve difficulties in decoding words.
  • The pictures helped activate background knowledge, reflect and make predictions about what might happen.
  • A single channel of communication enhances both emotional and factual understanding and this is  really important

Picture narrative (as used in wordless books) is easier to process than:

  • Illustrated written information (as used in ‘easy read format’)
  • auditory or written information

Beyond Words have published 60 books telling health and social stories entirely in pictures.    https://booksbeyondwords.co.uk

Communication barriers  some patients have experienced were listed in the presentation:

  • using long words;
  • being asked questions they cant answer;
  • not listening;
  • overload;
  • not clear;
  • jargon;
  • memory;
  • unfamiliarity;
  • complexity;
  • anxiety;
  • fear;
  • time;
  • strangers.

Consequences of reduced access to good healthcare for people with intellectual disabilities and/or autism are:

  • Higher rate of avoidable and premature mortality than general population;
  • Higher rates of adjustment disorders and depression

 

A brilliant Empathy underpins everything:

  • relational aspect of the clinician/patient encounters
  • treating every patient with respect

there is much too little research in learning disability”

A really interesting presentation by Baroness Sheila Hollins which I could associate with and I wish my local area would take her approach.   Whilst I agree relationship with the treating clinician is important unfortunately so far we have never had a good relationship with local clinicians who do not wish to listen and ignore other professional opinion.   Hopefully Dr Ilyas Mirza will be different.

After the conference I spoke to Baroness Hollins and Professor Butterworth and shared our experience of care in Enfield and mentioned my story ” get-her-back-we-are-paying-for-that-17-05-15 “.

I mentioned I had found excellent care through http://www.working-to-recovery where she stayed with MH professionals of many years experience.  Elizabeth travelled from Scotland to so many wonderful places such as Bilbao, Carcassone, Marseille, aix en provence, Lyon, Paris (for the World’s Hearing Voices Congress).  In Paris Elizabeth stayed on a house boat and then to Caen, back to Glasgow to catch the flight via Dubai to Australia where she had Elizabeth had the opportunity to work with international MH professionals which included therapy such as music/art and psychotherapy.  The MH professionals concluded “we believe the more we get to know Elizabeth there are learning difficulties.  She needs to do everything slowly and will need some support for quite a while”.  Working to Recovery have recovery houses in Australia where professionals work with people through therapy not drugs.  I wish there was such a facility in the UK as we saw amazing results when Elizabeth returned to the UK. This care cost a fraction as compared to  Cygnet and Huntercombe prison type facilities and was very positive experience for Elizabeth resulting in enhancing confidence.   Not only have the private MH professionals feel that Elizabeth had a LD, Huntercombe assessed her as having high functioning Aspergers but they have so far not released the report despite repeated requests and consent.  Elizabeth is entitled to see this and was entitled to also see the report stating complex PTSD when she was at Cambian in Wales.

I mentioned to Baroness Hollins of our experience locally and how Elizabeth has not had a proper assessment independently however was found to have full capacity recently.

My local area (Enfield) have over-drugged Elizabeth but so has the Royal Bethlem Hospital (National Psychosis Unit) where  “its all about Clozapine here – you should have done your research”.  Despite an Advanced Declaration which was ignored The Royal Bethlem gave Metformin together with Clozapine which is contra-indicated. I was banned from visiting and was threatened with arrest when I found out, by staff who wore name badges back to front.  Here is the Medication as listed in the files:

  • Clozapine liquid 150 mg BD (level 0.37 on 3/7/12
  • Bisoprolol 1.25 mg OD
  • Metformin liquid 500mg TDS
  • Multivitamin T OD
  • Aqueous cream
  • ADcal D3 1 tablet BD
  • Omega 3 fish oil T TDS
  • Lorazepam 1-2 mg BD PRN
  • Promethazine 25-50 mg BD PRn
  • Olanzapine 10mg IM OD PRN – this was raised to 30mg

During titration of Clozapine Elizabeth developed tachycardia.    She experienced  dizziness whilst starting Clozapine.  she was noted to have a raised eosinophil count.

Quetiapine XL 750 mg ON – decreased to 600mg 20.04.12

It is not true as stated in the files that  “Clozapine was helpful”  – I can get so many witnesses to say the contrary and that in fact it caused injury.  IT WAS AGAINST HER WISHES TO BE PUT ON THIS – SHE LOST CAPACITY AS STATED IN THE FILES AND THAT IS WHEN THEY TOOK ADVANTAGE.

Cambian in Wales continued with this drugging regime until I queried with the GP in Wales about the Metformine and he did not know what it was being prescribed for but I found out that this should only be prescribed by an Endocrinologist so obviously they found something physically wrong and I spent a lot of money on tests privately which proved my point.

Private mental health experts we paid for through “Working to Recovery ” discovered LD and complex PTSD.  Huntercombe (high functioning Aspergers).  However I would disagree with them that an ATU is the right place for Elizabeth.  I believe a therapeutic community or care farm is the right environment but Elizabeth has been placed in the community not far away from home.

I took the opportunity of speaking to both Professor Butterworth and Baroness Hollins about the degrading treatment Elizabeth has had in Enfield and other private institutions.  I do not think that Elizabeth has not seen a second opinion doctor despite there being huge conflict of opinion on diagnoses in the files.

All Elizabeth needs is kindness and understanding and all she wanted was friends which she has gained by being back on the wards and they come and visit her.  Everything that Baroness Hollins spoke of made sense to me.  Elizabeth has had brutal treatment under so called “care” by professionals – where is the evidence she has “Emotionally Unstable Personality Disorder” when it should be “complex PTSD just like Dr Bob Johnson states in his report for court purposes.  Elizabeth has the condition of “Selyes Generalised Adaptational Syndrome – sustained stress caused by Endocrine disruption.  How true this is and I have proven through Endocrinolgy tests everything.  I have also had the P450 liver enzyme tests done.  I showed them the test results to Professor Butterworth and gave him a copy of the results that state “poor/non metaboliser” .  I also told him that I had recently spoken with Professor Pirmohammed who said that these tests will be widely available under the NHS in the near future although I spoke of very urgent cases I was in touch with who need the tests sooner rather than later ie those being held “prisoners” and drugged at enormous levels in institutions.   Instead of wasting money on private “prisons” and ATUs there should be investment in research on drug adverse reactions and these important P450 liver enzyme tests allowing the lowest dosage of drugs to be prescribed to avoid adverse reactions regardless of whether someone has a learning disability or MH condition.  Such funding should be given to Universities such as Liverpool and Lincoln where Professors are doing important research.   Less drugs should be prescribed in accordance with guidelines -The Mimms Handbook of Psychiatry advocates the use of the lowest clinically effective doses of anti-psychotic medication to avoid adverse effects.  The dose should be carefully titrated to provide optimum balance between good clinical improvement and the fewest side effects.   Elizabeth suffered involuntary muscle movements, tremors and neuroleptic malignant syndrome on Clozapine whilst at home – neurologic toxicity.

Whilst at the conference I also showed the petitions of Gillian Speke and Tracy Best as well as  the shocking pictures of Elizabeth Before and after “treatment”.  Attached to the petitions was a list of the drugs prescribed at huge dosage.  Something needs to be done about this.  Both were at Cygnet Hospitals but it is not just Cygnet who prescribed at enormous levels – there needs to be proper monitoring in this connection.

At Moti Villa Elizabeth was multiply abused and she is therefore a trauma victim and according to NICE Guidelines drugs do not work for Complex PTSD.  I would have had no objection to Section 3 if the right care was given such as:

  • Psychodynamic therapy
  • Psychotherapy
  • Eye Movement Desensitization and Reprocessing (EMDR)
  • Cognitive Behavioural Therapy
  • Group and Family Therapy

With regard to the latter I as a mother an excluded but we would have liked Open Dialogue but sadly it is a Post Code lottery.  Here is what my local area of Enfield under Adult Services have to say about Open Dialogue in their Annual 2016/17 Report:

“We have been investigating alternative models of mental health care since 2015 and over the last year have been trialling an approach known as “Open Dialogue”. Developed in Scandinavia it involves focussing on relationships and dialogue with family and friends rather than concentrating on symptoms which is the usual approach of traditional services.  Medication is still used although research to date has shown that it is not needed as much and that patients have better long term outcomes. 13 staff are being trained during 2017 over four residential training weeks.”    Well why haven’t we as a family been included in this trial.

Elizabeth has made some very nice new friends on the wards recently.   All that Elizabeth wanted was friends.  Whilst Elizabeth is placed under the current scheme on a CTO she did tell the team that she could not guarantee that she would stick to things in the community.  This is why CTOs are a waste of money.   One of the major issues is being forced to take drugs that should in fact only be given short term not long term according to manufacturer’s instructions.   The problem is that the local team will not budge on “paranoid schizophrenia – treatment resistant” and “emotionally unstable personality disorder”  –  I see this diagnosis as an insult when Elizabeth was  badly abused under the scheme Moti Villa as on CCTV which the police could not find. NOTHING WAS CONSENSUAL SO PLEASE STOP TRYING TO MAKE EXCUSES.

Elizabeth has not met her new Consultant Psychiatrist Dr Ilyas Mirza yet.  I doubt I will ever get to meet him as we seem to be excluded from the Open Dialogue trials.   Elizabeth was on 2mg of Rispiriedon – an anti-psychotic drug licensed for patients with Schizophrenia and Bi Polar.  Elizabeth has complained that the drug has made her feel very tired and in her own words “I cannot stand any more Mum”.  Elizabeth announced last week that she is no wishing to take any more of this drug but I advised her not to come off it without discussing things with her Doctor and negotiating a slow reduction like Dr Ann Blake Tracy mentions however Elizabeth did not listen.  So this coming Monday there is a meeting at her scheme that I have not been invited to.  Elizabeth wanted carers and therapists she is familiar with to attend this meeting –  I would have preferred her to come off this drug slowly but I think that this should be monitored by Dr Moncrieff and her researchers under the RADAR scheme.

Finally  Chy-Sawel (Cornish for ‘House of Health giving’ chy-sawel-project.co.uk is featured in “Cornish Christmas Giving Catalogue”.  Donations can be given via the website of Chy-Sawel (chy-sawel-project.co.uk).

“Chy-Sawel is Cornish for ‘House of Health giving’ which rather aptly describes the primary aim of the Chy-Sawel Project, to establish a ‘Healing House’ Treatment Centre that will provide respite from prescriptive medical practices.  Instead of a reliance on pills, Chy-Sawel hopes to improve mental health by utilising the latest advances in blood testing, alongside an holistic approach, encompassing a nutritious diet, practical activities, exercise, talking and creative therapies.  Helping get lives back.” 

Wonderful!  this is exactly what I and other mothers would like to see.  If only we can have this kind of care in the UK – much needed choice and also the recovery houses and unique humane approach of http://www.working-to-recovery in the UK based on the wonderful care that they provide.  We did not recognise Elizabeth when she came back from Australia.  Why cant this be provided in the UK instead of private prisons costing £13000 per week.

About the Speakers of the Conference “Better Mental Health – Beyond Words Approach”:

https://www.gov.uk/government/news/professor-tony-butterworth-cbe-confirmed-as-acting-chair-of-the-nhs-institute-for-innovation-and-improvement

https://en.wikipedia.org/wiki/Sheila_Hollins%2C_Baroness_Hollins

I thoroughly enjoyed the conference and your presentation.

I hope to come again to other wonderful events at the Royal College of Nursing and I would like to know if I can have the link to the recording of this sold-out conference to put on my website.

And finally to Baroness Hollins – I shall write to you privately –  I wish that more professionals would have such an understanding as you have in communication with those who have LD/Aspergers.

I don’t know what Dr Mirza will do about Elizabeth.  They might as well get rid of the CTO and instead give Elizabeth more therapy of the correct nature.   Baroness Hollins suggested RESPOND and I have previously asked for this.  I will keep you all informed.

 

 

 

 

 

Advertisements

THIS HOUSE BELIEVES THAT FUNDAMENTAL REFORM OF THE MENTAL HEALTH ACT IS REQUIRED TO REDUCE DISCRIMINATION AND UNNECESSARY DETENTION.

PROFESSOR ANTHONY DAVID – CHAIR

PROFESSOR GEORGE SZMUKLER (Emeritus Professor of Psychiatry and Society at              the Institute of Psychiatry    (For)

THE RT HON NORMAN LAMB MP (British Liberal Democrat Politician and Solicitor.  MP for North Norfolk since 2001.  Chair of the Science and Technology Select Committee.  (For)

AGAINST:  PROFESSOR ANNIE BARTLETT

AGAINST:  Professor Scott Weich – Professor of Psychiatry (Institute of Psychiatry)

 

E – petitition

Corinne

SANDRA BREAKSPEARE OF CHY_SAWEL WRITES:

My son has been in the mental health system for almost 28 years.

Despite all the interventions of psychiatry he has for the last 18 years been detained in various mental health hospitals and is delusional on a daily basis.

He has been given almost every drug in the system and also ECT so if this is the current cutting edge of scientific treatment why hasn’t he had some sort of recovery rather than sink deeper into the delusions he lives with now??

He wasn’t even 23 years old when he had his first psychotic episode which was brought on / due to a so called friend giving him LSD at Christmas 1989, he is now 51 he will never get those years back.

With my feeble brain I think if LSD a mind altering chemical can cause damage which it did to my son how can pumping him full of more mind altering chemicals help?? Over the years  I have seen many patients in the hospitals even longer than my son.

There definitely needs to be a new mental health act with psychiatry being brought into the 21st. Century with a more compassionate, humane way of care, dignity and respect for their suffering. Treating the whole person and not just the symptoms with the chemical restraint of today’s treatments

I vote for a NEW MENTAL HEALTH ACT.  –  Sandra Breakspeare.

(Mother/  Trustee) Chy-Sawel Mental Health Charity.

ELIZABETH ALSO VOTES IN FAVOUR OF A NEW MENTAL HEALTH ACT SO DO I.

What about all those locked away  who could not attend the debate – I would change the title of this event to read:

“THIS HOUSE BELIEVES THAT THE FUNDAMENTAL REFORM OF THE MENTAL HEALTH ACT IS REQUIRED TO ELIMINATE ABUSE, DISCRIMINATION AND UNNECESSARY DETENTION.” 

I attach a few links to my blog to highlight the need for change.

“GET HER BACK WE’RE PAYING FOR THAT” :-  A true story of how we were treated back in 2014 when Elizabeth did not wish to return to the care home provided by Social Services hundreds of miles away where she had no food at the weekend (as per files) and was asked to choose between Mum and Dad.   “We are not speaking to you any more Ms Bevis as Mr B is next of kin”

ROYAL COURT OF JUSTICE – DISPLACEMENT OF ME AS NEAREST RELATIVE  –  Fancy turning up at the court having been told the time at midday, having been given hardly any warning with just a couple of hours to get to RCJ, and not having been given the correct court number.  I ended up attending the wrong court in the wrong building whilst proceedings took place elsewhere.

HOW A TEAM GANGS UP  –  Yes they certainly do know how to gang up and mental health law can easily be usurped.

Adult Treatment Units to ‘Community Living’ – Turf War for Billions ? — finolamoss 

SECTION 17 Leave  –  Talk about stigma!  This is treating everyone like criminals.

YOU WILL LOSE ME FOREVER IF YOU ARE NOT CAREFUL, MUM   –  this can easily be done when a team send someone far away and take away the phone.  For instance I have a note from someone from SLaMs legal team “you may wish to consider taking the phone away as this is a means where mother can remain in contact”

ABUSE AT BETHLEM ROYAL HOSPITAL  I will never forget this prison and yet they could not get rid of me fast enough.  I was threatened with arrest. “its all about Clozapine here – you should have done your research”    They succeeding in putting her this and when I saw Dr MacCabe at the Maudsley Debates I was quick to say what I thought about this chemical he seems to support so highly in his presentations.

DRUG INDUCED PSYCHOSIS AT THE BETHLEM HOSPITAL

Professor George Szmukler spoke of the differences between physical and mental health and how patients are treated and whilst someone can refuse treatment for physical health under the mental health matters were very different and described a case of someone refusing physical health treatment who had capacity. He then stated if this person had a mental disorder and made the same responses under MHA compulsion is based on two different criteria “risk to self or others” (disorder plus risk formula).  The autonomy or self-determination of people with mental disorders is not accorded the same respect as is given to all other patients.  A psychiatric patient’s ability to decide for him/herself can be ignored; nor is there any notion of ‘best interests’ from the patient’s point of view, largely according to his or her deeply held beliefs and values –   not what the doctor thinks is best.

Mental health law formula has not changed for over 200 years.  The recent turn in medicine from paternalism – doctor knows best – to patient self-determination, sadly, has passed psychiatry by.

He spoke of ‘Fusion Law’ – a generic law applicable across all medical specialities in all settings. Where a person has a difficulty in making a serious treatment decision, involuntary treatment would only be permitted, first, when objecting person is unable to make a decision for themselves – from any cause (whether physical or mental disorder) – and second if treatment is in the person’s best interests.

The solution for eliminating that discrimination is a generic law.  Northern Ireland has taken the ground-breaking step of enacting such a principled, rights-based law.

I would add that once you are declared ‘mental’ no one looks at physical healthproblems as it is not profitable.

THE RT HON NORMAN LAMB also delivered a good speech in favour of change to the MHA and I agreed with what he said especially with my own shocking experience of the MHA and being the Nearest Relative that the team want rid of and constantly having to go through court.

Its impossible to fight a political system unless you change it. 

I mentioned to Mr Lamb about private providers such as Cygnet, the cost per week of such facilities and how they have not benefitted Elizabeth and she had come out worse from Cygnet Stevenage.  They are not offering the right kind of care, patients are trapped on wards and not allowed out.  I distributed the petitions of Gillian Speke and Tracy Best and had photocopied these to highlight the failure of the MHA in keeping vulnerable people incarcerated at huge cost hundreds of miles away from home and family.  They are just left to deteriorate on wards.  Whilst other NHS services are drained of funds there is huge provision for these expensive all for profit prison-like facilities under the MH.  These facilities seem provided by NHS England.

There seems to be no support in the UK – seems to be all about max profit and no accountability.  Cygnet for instance is one of the main venture capital max profit providers whose hospitals charge £12500 pw.  I understand Cambian are also taken over by Cygnet’s owners UHS. Simon Stevens (Director NHS England) was once CEO.

The other speeches were good also but I believe only if there is change to the MHA can discrimination and abuse be ended and I think if things are left as they are then things will become worse.   There are a lot of people suffering right now and deprived of contact with their sons and daughters.

The law needs to be changed surrounding Nearest Relative –  I have been taken to court so many times and treated like a criminal.  There needs to be political change to restore separation of powers and rule of law.

The law needs to be changed surrounding MCA/best interest and in cases where there is lack of capacity, Court Orders restricting freedom of speech.  Every assessment should be done independently, not by AHMPs.   Elizabeth has fortunately been found to have capacity.

The cases mentioned above are just a few I am in touch with, who would all be in favour of change in the MHA.   Lastly here are the votes.

Voting - 56 Maudsley Debate

Unbelievable!  –  I doubt there was that many in the audience who were affected by the true reality as reflected in these votes.   This shows that the majority do not have an understanding of the effects of such an unfair system with a MHA not fit for purpose in my opinion and of the opinion of many others also badly affected and let down.

Panel - 56 Maudsley debate

MESSAGE TO THE RT HON THERESA MAY PRIME MINISTER

After the debate there was a reception with drinks and canapes –  I took the opportunity to speak to a few people about the petitions and cases I am in touch with because of the failure of the MHA.  Just look at the case of Sandra Breakspeare’s son.  All have family who deeply care and look at the situation.

I would like to see urgent changes – it is appalling how people are treated in the UK both patients and their families.

 

 

 

 

 

 

8 years trapped in cygnet             Elizabeth has been under two Cygnet Healthcares – one in Cygnet Stevenage and one that is supposed to be the flagship in Beckton.  I have been to their conference at the Royal College of GPs and I went with someone I know who has a brother in this expensive private hospital who wishes to be transferred elsewhere.   I was extremely interested in the conference which was very well organised and took part in a workshop called “least restrictive care” –  well I had to say what I thought –  Elizabeth thought it was like prison and I could not disagree with this description.

Most disturbingly, drugs are given at enormous levels to some patients. I list below the drugs given to the young person photographed above who has given her permission for her case to be made public as she would like to leave Cygnet and be nearer her grandmother and I have evidence of this.  Elizabeth was on the same ward at Cygnet Stevenage and then this young lady featured was transferred hundreds of miles away to Derby just like Elizabeth was tranferred to Cambian in Wales.  Elizabeth had the drugs increased to 20mg of Aripiprazole at Cygnet Stevenage – a drug I had to report for adverse reactions – Yellow Card.  She was unstable when she came home.

However, even more disturbing is the huge level of drugs given to patients who may not have a regular visitor – who become stuck under “care” in a system rotten to the core where there is no accountability.  I therefore feel it is very important to speak out and reveal what one young person, who has been stuck in Cygnet for 8 years, is receiving in terms of shocking “care”.  The question is just how many other patients are being given drugs at this enormous level against all guidelines.  There needs to be a full enquiry into this.  Why isn’t there any accountability for treatment such as this?  What I am documenting is a real case of someone who is desperate to be released from a never ending prison sentence and has done nothing wrong under the care of Cygnet private hospital DERBY.  What kind of Doctor prescribes at such huge levels against all guidelines to a young person who is kept a virtual prisoner.  How many more are being treated in this way whilst the Government does nothing.  Who is responsible for this abuse?   Who is paying for it?” –  which Local Authority or Trust is responsible?  Well I have since found out it is Special Commissioning NHS England so I believe.  I hope that something will be done urgently about this as lives are at risk –  are there any more cases like this on the ward?   To think that this is “care” in the UK.   It’s not about stigma –  this is abuse.    Any more cases like this – please contact me.  I shall keep you all informed as I’m in touch with lots of other similar cases.

Regular Medication:

Sertraline 200mg mane; Depakote 750mg BD; Mebeverine MR 200MG BD; Metformine 1G bd; Atorvastatin 40mg OD; Omeprazole 20mg mane;  Furosemide 50mg mane; Dapaglifozin 10mg mane; Diazepam 5mg TDS; Colecalciferol T OM; Kwells 300mg TDS; Clozapine 225mg BD .

PRM Medication:

Ibrufen 200-400mg up to QDs; Epipen 0.3mg up to 0.9mg; Cyclizine tab 50mg up to 150mg;  Procyclidine 5mg PO max in 24 hrs 10 mg; Olanzapine 2.5-5mg max 200mg (PRN + regular); Promethazine 25-50mg max dose 100mg in 24 hrs;  Salbutamol 100mcg; Glucogel/Glucsgon T; Corsodyl ; Lactulose;  Stat dose of Clopizol Acuphase given on 3 occasions since admission – forcibly injected.

Estimated stay at Cygnet 2 – 3 years but this young person has been in there 8 years.

As Inspector Brown (Mental Health Cop says – “what the hell is going on”  Cygnet are making huge profits by drugging up vulnerable patients who they think do not have anyone who cares for them.

A Life has been lost on the ward in question – now in touch with the mother.

Are they trying to kill their patients – what kind of doctors prescribe this amount of drugs concomitantly.   Cygnet – what’s your answer to this – lets hear it on Twitter!

Here is a response from someone who is an expert on the drugs:

“This is an even more ridiculous dosing regimen than I have ever seen.  SSRI’s with atypicals are totally rejected in the Maudsley prescribing guide and Mimms.  Benzodiazepams, SSRIs and Atypicals even more idiotic.  What is the procyclidine for?  there are no neuroplectics in that list that justify an anti-parkinsonian agent.  This dosing regimen is utterly ridiculous and very dangerous.”

Are all patients under Cygnet under this huge level of drugs.  Questions need to be asked before yet another life is lost on this ward.  There has already been one death so I heard.

Any National Newspapers interested in documenting the widespread abuse of vulnerable people in the UK please do contact me.

 

 

The RC from Suffolk Ward is not in any hurry to discharge Elizabeth from Section 3 even though of no risk to self or others.  I’ve no idea how much longer she will be held on that ward. I thought there was a shortage of beds but obviously I’m wrong.   Elizabeth has said they wish to keep her longer –  I will keep you all informed as to why.  The truth always comes out in the end no matter how much secrecy the team like to play on.

More positively –  I took Elizabeth out every day over this Bank Holiday weekend.   I drive just to get away from the hospital and local environment.   Yesterday a wonderful visitor came to see Elizabeth –  one of several important ‘advocates’ who has therapeutic skills.  Will tell you more in future.    Friends like this who think of others before themselves when time is so precious are invaluable especially when someone like Elizabeth is stuck on a locked ward and restricted in leave.  There are several people who have gone out of their way to take an interest and care which is so encouraging for Elizabeth and I am extremely grateful.

Yesterday we went for a drive into the countryside.  Today we went swimming and every Sunday I will offer to take Elizabeth swimming so she can build up her confidence.  Her technique had already improved by the end of her swimming session.    I once did competitive swimming myself so was able to teach Elizabeth technique.   I will provide a membership for her eventually.

There is no communication – confidentiality played upon – no one wishes to inform you as to release date.  In my opinion and that of other doctors, this is not the right environment for Elizabeth.

I would question why the right environment is not being provided anywhere in the country as a noisy acute ward is no place to get well for someone with PTSD or those with Learning Disability/Aspergers.  It is not the right environment because there is nothing to do at the weekend,  there ought to be facilities such as swimming pool, gym/sauna but no one cares about MH in my local area so it would seem.    Vast sums of money being spent on private sector “prisons” instead of invested in good facilities that could provide suitable therapy to make people well.    People under MH get dumped into the community in schemes full of control where they are given nothing to do.   If everyone had a personal budget to choose which support worker they wished to work with, what activities they would like to do  – this is what should be provided rather than an expensive PICU or acute ward through Cygnet, Cambian or Huntercombe.   Sometimes vulnerable people are kept for months and months on end like prisoners in institutions such as these.  I would like to know how many exactly are being held in institutions who have suffered long drawn out tribunals etc.

I will keep you all informed.   At least now she can get out at the weekends and during the week can go for a walk in the grounds etc.  That is something and also after quite some time Elizabeth has had the ban lifted on seeing family outside of the ward.

 

 

 

Elizabeth remains on Section 3 (no risk to self or others) but it would appear that the team want to hang on to her longer in an environment (an acute ward) where other Doctors feel is totally wrong.   Last Friday, Elizabeth told me she visited her scheme which had been left open for her return again.  The scheme is situated a distance from the hospital and you need to go by transport.  I was surprised that she was left to visit alone but, at the same time, I was pleased as it shows Elizabeth is capable but she was anxious and upset at the length of time waiting for buses. It will take time for her to adjust and regain confidence.  Elizabeth spent a few hours at the scheme and there seemed to be no changes in staff, apart from the fact the very nice care support worker was no longer there I was disappointed to hear.   Elizabeth especially got on well with 1 support worker and Elizabeth had gone out of her way to find where she was.    I  was impressed with this member of staff who very dedicated and had that special quality in terms of her understanding of Elizabeth.  When she was not there, Elizabeth once said “no one understands me Mum”.  Certainly no-one understood what it felt like coming off drugs after so many years and this was a scheme like many others who encouraged the taking of anti-psychotic medication etc. I’m sad that this wonderful member of staff is no longer there and maybe she now works at another scheme and  I wonder why she left?

What went wrong at the scheme:

When Elizabeth was discharged from hospital there was no running water and no toilet facilities until late the next day.    The care coordinator recently tried to deny this.  Elizabeth asked me to visit the day after her arrival when services had only just been restored – this was late afternoon.   There were no cooking utensils or pots/pans etc.  I was surprised they could just discharge someone from hospital in such circumstances.  My first impression was – nice house – nice area close to all amenities -most of all a brilliant support worker and it is not often I can say this.    I later brought round garden chairs, Barbeque, saucepans and cooking utensils and a fridge for Elizabeth.     This scheme has not worked out for Elizabeth on two occasions so far.   She was drug free on both occasions but her behaviour could flare up if put under pressure by staff as Elizabeth was adjusting to new surroundings.   Elizabeth was immediately encouraged to participate but not everyone understood that she was not feeling very well –  she was complaining of physical/chronic pain and she was not given time to settle down and do things gradually in her own time and this is why it failed.   She needed time to adjust to new surroundings after weeks on various acute wards that had further traumatised her and should never have been rushed.  She could overhear staff members conversations to the effect they did not think she was doing well -and felt under pressure knowing she was on a month’s trial.  She did not wish to attend meetings which her care coordinator (known to our family since the 2014 court of protection case) tried to arrange so soon after arrival.  Pressure such as this triggered her behaviour and she acted in frustration and they have a zero tolerance policy and staff will threaten to call police unlike the private professionals we provided who could deal with any situations by talking therapy.  However, there was one outstanding support worker who had quality in knowing how to deal with such situations and understanding  when to stand back and give space.  Even if someone has loads of qualifications sometimes they lack insight.   I am astonished at some of the things the care coordinator has written, especially in the safeguarding minutes which I have.   A care plan she produced omitted huge chunks of information and only “paranoid schizophrenia” was stated as diagnosis, totally disregarding other doctor’s professional reports and opinions which I have.  I would therefore regard this care plan as being wholly inaccurate.

Further Comments:

I would like to correct recent wrong allegations/accusations that I did not request medication being stopped recently.   I was far from happy to learn that an addictive drug such as Lorazepam was being offered at regular intervals several times a day at this scheme by care support workers.  This drug should only have been given as and when required.  This was another reason why Elizabeth was getting upset.  Elizabeth was allowed to stay drug free on the NHS wards at her own request but she was in the wrong environment and able to witness the horrific things that go on to other patients on these wards. It can take five years to recover off psychiatric drugs so I have heard.     It might have worked out for her if she had been placed in a peaceful natural environment not an acute ward or a scheme where she was being put under pressure and no one understood that she was experiencing chronic pain.   There is not enough knowledge by doctors on withdrawal and the side-effects of this, misinterpreted as symptoms of “illness” so I am delighted that Dr Joanna Moncrieff is doing research into this right now.

I am now told by Elizabeth that her care coordinator thinks she would benefit from a longer spell in a psychiatric hospital.  What does she mean!   I would state that she is a “prescribing nurse”  – who has very strong conflicting opinions against that of several doctors who all state that acute/PICU wards are the wrong environment.   A prescribing nurse/care coordinator knows seems to know better than any doctors in my area to come out with opinions like this which I would say is very wrong.     There seems to be such huge divide in opinion by various professionals as to what is right or wrong for Elizabeth who have been involved in Elizabeth’s care or asked to report on same for expert opinion.  I would say environment is one of the most important factors. A peaceful natural environment is best.    I feel The reason things did not work out for Elizabeth is that she should have been given time alone to settle before being pressurised to attend meetings. Things like monitoring progress and procedures should wait until someone settles down first and not enough consideration was given in this respect.

I have just spoken to Elizabeth and told her that I am busy writing my blog which she knows all about.  Elizabeth has written herself on this and if she feels up to it I will go through her wonderful notes on Australia later and we will produce the second part of  “My wonderful Care”  To recap the first account of the wonderful care we provided was all about Scotland France and Spain and Elizabeth has kept a diary of her time in Australia too and Elizabeth likes writing.   Elizabeth could not wait to get away on holiday to Scotland and liked it so much that she wanted to stay longer and nothing could have persuaded Elizabeth to stay longer if she was not enjoying her time away.  She was with mental health professionals who had outstanding unique ways of dealing with trauma and used therapy instead of mind altering chemicals.   Pity we do not have care like this within the mainstream system.  Elizabeth said there was not enough talking therapy and something needs to be done about this as if less money was spent on the private sector then there would be more money available to spend to improve local care and I think a complete change needs to be made as there is so much wrong with the current system.

I am so pleased that Elizabeth’s progress is good as she has been through enormous ordeal and I put this down to the fact that she has learned a lot during her time away through http://www.working-to-recovery.  Now she has happy memories to look back on unlike before.  Anyway yesterday we had a good day out.  I had to take my car to the garage first as having just had it serviced  there was a problem but after this, we went out for dinner and did some shopping. Whilst out, we talked about the scheme in the community.    I just said to Elizabeth that surely this is better than where she is now on an acute ward and she agreed and only hope she settles without the pressure from certain members of staff to attend meetings.   I feel that Elizabeth has had a horrific time being sent from one shocking “hospital” to another (some that are more like prisons)  at least she would not be quite so restricted.   There are good amenities nearby to her scheme that she could join things and go out on her own so there are lots more options.   There are facilities such as  gyms, doctors/dentist, physiotherapists all close by – with good transport to get to areas further afield.  When she is confident enough she could meet me after work in London as the scheme is not far from a tube station.  The most crucial thing of all is how staff deal with Elizabeth and how she responds but I have said to her that if she is unhappy there are plenty of other options and she go out to get away from things. They need to give her a front door key as it is not good when you cannot get back into your home and have to rely on staff to open the door.   Right now on Suffolk Ward even getting off the ward is a problem with some staff making an issue.   Some staff are of the opinion that Elizabeth is not allowed out to see me at all like before.  They are either not informed or do not read the Rio notes properly.   I have come across treatment at Cambian and the Bethlem where staff tried to restrict contact between myself and Elizabeth –  Cambian even gave supervised phone calls and tried to make out it was Elizabeth’s idea which was untrue. On Suffolk ward they try to make out that Elizabeth does not want me to have any information – this is not true either.  They achieve this by having her in first at meetings amongst the staff and then I was called in separately but when I asked if Elizabeth could come in and join the meeting with myself staff quickly spoke for her and made an excuse.   It is pretty obvious that it is the professionals who do not want me to have any information and not Elizabeth.   Even with an advocate present this means nothing when surrounded by 6 staff, several of whom are doctors.  I think it is undignified treatment when someone encounters problems in coming off the ward and also when a member of staff refuses to disclose the basic of information such as where Elizabeth had been transferred to stating it “confidential” – I was at the time the Nearest Relative too so they did not wish me to know.  It was Elizabeth who told me she had been sent to “Huntercombe”  in Roehampton and she was having to use the hospital phone as they had confiscated her camera phone.   Now they have gone and lost this camera phone and I made a big fuss about this phone being taken away from her and I am still waiting to get it back and it would now appear they have lost it.    Huntercombe have corresponded to the effect that Elizabeth has signed for all her possessions but I was there on her arrival back to Chase Farm and that phone was missing and now I want the phone replaced as it is only fair that Huntercombe replace it.   I will let you know how I get on as I think they are trying to get out of this by arguing.  It is a matter of principal in my opinion.

Getting on and off a ward can take some time especially as there is not enough staff sometimes to deal with things.  A patient might be stuck outside their offices for a long time whilst staff are too busy in that office to deal with them.   Anyway eventually Elizabeth came off the ward yesterday and we could go out.

Whilst out Elizabeth enjoyed her time with me to the point that she said she would like to ask for more leave than just two hours a day.   In fact we were out much longer as I had trouble with my car but no one was chasing to see where we were.

The other thing that is evident is that staff like to put patients down and do not encourage them.   It is different from the care we provided in Scotland, France, Spain and Australia by “Working to Recovery” .   What a fantastic job they did.   In contrast when you look at the remarks by doctors, care coordinators, social workers and psychologists/nurses under mainstream care there are very few nice and positive remarks. There is nothing nice said about me as you can all imagine.   As regards Elizabeth they paint a bleak picture of someone who is complex and make that person out to be far worse and say things that are completely wrong/inaccurate.    Past history needs correcting – I told the team this many times.  I hope you are all reading this team!    I have re-written an accurate account of past history in “Summary of Care”  This needs to be included in the Rio Notes.  If you do not make necessary adjustments mistakes can occur in treatment.     I need confirmation that this is done.   Please can someone from the team confirm to me that you have amended “Past History”.

Private MH professionals saw no sign of psychosis during Elizabeth’s stay with her and recognised there could be a learning disability but there is contradiction in comments by certain professionals.   I can understand why Elizabeth does not like meetings – words can be twisted and the result is minutes and reports are inaccurate and need to be corrected.  The team can wrongly document or have misunderstand from a communication point of view as seen from the certain minutes and file notes.  This is a ward specialising in MH problems not complex PTSD or Aspergers so this is where the problem lies. Before meetings in the community take place, Elizabeth should have an independent advocate present at all times but I think that it is ineffective when the advocate comes in to a meeting and opinions are sought from Elizabeth.  I think that the Advocate should have discussed opinions first and then to be sure Elizabeth should be invited into a meeting with me and others afterwards.   It is against the Code of Practice of the Council and Trust not to provide an advocate and this is extremely wrong.  I have quite rightly had to complain about this and I look forward to seeing that changes have been implemented after the last safeguarding meetings.  It is wrong that every email and correspondence from me is to referred to the Deputy Leader of Quality who also chooses not to respond playing on confidentiality with the excuse of “resourcing” that they must think of saving money but this is laughable when you think what huge money is being spent her night after night on an acute ward c£900 per night and then Huntercombe and two Cygnets it strikes me that there is huge money in the local area so what is the cost of a response to my email in comparison?  The truth always comes out in the end no matter how much you play on confidentiality and Elizabeth is keen to discuss.  Elizabeth’s wish is that I “do something to change the rotten  system” but I do not know where to begin – it is a mammoth task that should be tackled right at the top at Government level.  Well I am only too happy to document what is wrong with the current system – EVERYTHING! and what changes should be made.

I will end my blog to say IF ONLY THERE WAS OPEN DIALOGUE – IF ONLY WE COULD HAVE BEEN TRANSFERRED TO DIALOGUE FIRST –   why does my local area not move with the times? – there would not be this problem of “resourcing” as I would not have any complaints for them to answer.  There would be proper communication unlike at present.

Message to the Team

If I was employed in Quality the first thing I would do is to make things open and honest and give an option to everyone as to whether they wished to be involved with Open Dialogue.   When we did Open Dialogue at ISPS I was impressed by professionals from other areas and Elizabeth did most of the talking all about when we were taken to court in 2014.   I must join again as they have some good events and this one was held at Leicester University.  I did not see anyone from my local area there yet there were social workers and professionals, including psychiatrists from other areas and it is a shame that Enfield is behind the times.  Thank God there are doctors such as Dr Russell Rassaque and Dr Moncrieff who are not afraid of change.    We met the criteria for Dialogue First on Elizabeth’s return from Australia but our request was denied and I would like to know why?   At ISPS regardless of whether you are a service user, a carer, an alternative practitioner, Doctor, social worker, nurse or any other professional everyone got treated the same and there were no barriers.   Why is this not the case locally?   Why aren’t carer’s and service users listened to and treated like they are nothing/invisible?   If a carer or service user dares to complain why are they treated with such contempt and why is there so much bullying against anyone who they should be working with and not against.    No, it is not impossible for me to work with professionals –  it is the professionals who do not work with me.    I would quote Dr Bob Johnson – “truth trust and consent” and I would recommend the team read his book called “Emotional Health” and  also “Images of Trauma by Professor David Healy.

Last of all Elizabeth said yesterday she would like more than just 2 hours leave and I hope that this can be accommodated –  it is wrong to assume that Elizabeth could ever be forced to doing anything she did not wish to do as she has a mind of her own.

OUTINGS

Outings at the weekends should be provided to those patients who wish to go out and are stuck on sections, many of whom are of no risk to self or others.   There is nothing to do at the weekends and I believe that these things would benefit the patients who would then have something to look forward to.

I wish that everyone could come along to the last of all fabulous summer camps run by http://www.working-to-recovery –  if anyone is going I look forward to meeting you and there are professionals, service users, carers all attending, some from abroad.  A different approach is needed throughout the UK – more therapy and more holistic care and emphasis on nutrition and proper assessments.

 

 

Another meeting on Suffolk Ward before a team of 6, including RC where all were stating that Elizabeth did not give consent to share information with me.   I’d taken a day off where no one wanted to speak to me or give me any news.  Elizabeth was not encouraged to come in with me.

Present was RC, Clinical Psychologist plus care coordinator and two other doctors plus advocate.

Elizabeth has not been allowed to go out anywhere off the ward with me for many  weeks but on this occasion just 1 hour was granted.   We went out for lunch then I went home.  Whilst out with me, Elizabeth was more than happy to share every bit of information which is contrary to what I was told by the team that she did not wish to share any information.

I said to the ward manager Kirk Hopwell that what is needed is openness and transparency and inclusion in the local system of care which could only be achieved by way of “Open Dialogue”.

I suggested at the meeting that Elizabeth liked anything to do with music, animals, art.   When I mentioned about a music project I had heard about this was the most positive thing about the meeting.

I wrote a letter at the end of the meeting with a few other comments as I feel that thought should be given to the staff employed to work with Elizabeth. There was once a brilliant support worker who was helping her who I was very impressed with plus someone else who could also help but has limited time but nevertheless – 1 day could help specifically with certain things which I pointed out.

I was told the team wanted to work with me but so far all they have done is work against me.  That awaits to be seen.

I would like to say more about what I am currently going through but I cannot right now.  It is like living under a cloud.

 

 

 

 

Back in April 2014, Elizabeth had leave from the care home and I took her to Woburn Abbey but we had to leave early as she was feeling ill. She appeared highly anxious, felt dizzy and could barely walk.  She could not relax or enjoy the day out.  It is not the first time I have seen this and been concerned for her physical health.   It was a beautiful hot sunny day yet when we arrived home Elizabeth complained of feeling cold.   She put on a thick winter coat and scarf and sat out in the garden, her hands like blocks of ice.

I returned her to the care home but, following her return I experienced difficulty in contact which I was later told was due to a bad signal in her room.  I was concerned that she was in bed by 6.00 pm.  Something did not feel right.  On a previous visit home, Elizabeth mentioned a nurse putting pressure on her but would not emphasise further.    So I arranged another weekend’s leave and her booked in for an appointment to see an Endocrinologist.   I was interested to know why she had been prescribed 500mg Metformin off label at the Bethlem Royal Hospital. The team said for this was for “weight loss”  but I knew this was contra indicated. These drugs continued to be prescribed whilst at Cambian and I knew the  drug Metformine was for diabetes.  The GP in Wales was also not sure why she had been prescribed this but was told it was for weight loss.

8th May 2014: –

Elizabeth’s sister collected her from the care home hundreds of miles away and she stayed with her grandparents. The next day we saw the Endocrinologist but when Elizabeth showed me the drugs chart I was not happy.  There seemed to more drugs prescribed than I could remember previously.  All we were given was Metformin and Clozapine whilst at Cambian but she was granted hardly any leave and had none at all whilst at the Bethlem Royal Hospital.  Now suddenly there appeared Bisoprolol, Senna and Lorazepam (as and when required) on the drugs chart so I telephoned the care home but was told  “we are not speaking to you any more – Mr B is next of kin”.    I then asked a firm of solicitors to investigate and their findings led back to the local social services department which did not surprise me, as it was this department who had made repeated attempts to displace me as Nearest Relative in the past.    As Elizabeth was discharged from Cambian not on a CTO and I thought they might be trying to arrange a CTO or do something worse like restrict contact and make further attempts to displace me once again and I was correct.

9th May 2014 –

The Endocrinology appointment went well and I was rest assured that I would soon have the results seeing as this was a private appointment.  Elizabeth’s supply of drugs from the care home would run out on Sunday 11th May.

 

10th May 2014

Elizabeth said that she was no longer happy at the care home due to a nurse putting pressure on her to choose between Mum and Dad.   She said she did not wish to go back so I told her that since she was not on a section that she did not have to go back and could stay at home if she wished.

Sunday 11th May 2014 – Day 1 without the drug

I was due to take her back to the care home.  Drugs would run out that evening and I had spent most of the day on the phone talking to Crisis/Home Treatment Teams, NHS England and emergency out of hours social services, none of whom could help me and advised me to return her back to the care home. Eventually I spoke to the Manager of the care home but, despite offering to drive hundreds of miles there and back to collect the drugs, he refused to give them stating “it is more than my job is worth”.   I knew that if I returned Elizabeth she would be sectioned.   That evening I drove to two local hospitals to try and get a supply of the drug Clozapine but failed to do so.

Monday 12th May 2014:   – day 2 without the drug

I took Elizabeth to the local GP and got her registered. I obtained a prescription for the Clozapine but nothing prepared me for what was about to happen next.    Whilst at the Doctor’s surgery, the social worker called demanding I return Elizabeth to the care home “get her back we are paying for that”.  I refused because Elizabeth said she did not wish to return there and refused speak to the social worker on the phone.  Later that day I received another call from the Manager of social services who again demanded her immediate return to the care home and said I would not be able to obtain the Clozapine anywhere in the local area.

I had already taken Elizabeth to the local hospital where she had undergone the blood test necessary in order that Clozapine can be prescribed.  However, when  I presented the prescription to the Pharmacist we spent hours waiting until finally be refused to prescribe the drug.  He mentioned his conversation he had with the Manager of Social Services and said he could not help me, his excuse being that he could not get hold of a Consultant Psychiatrist which was necessary in order to prescribe the drug. I felt sorry for Elizabeth as we had spent all day waiting in that hospital but I was determined to get her to see a consultant psychiatrist so we then visited the mental health.  We again waited a long time, until finally a consultant psychiatrist saw us along with two other members of staff.   By this time it was late evening.  I was advised by him to take her back to the care home.  He said there was nothing he could do and that as it had been over 48 hrs, she would need to be retitrated from scratch.  I said that this was not true as it had only been c26 hrs without the drug but he refused to listen.   We had no choice but to leave the hospital and come back home without the drugs.

 

 

 

Tuesday 13th May 2014:  – day 3 without the drug

We again visited the local hospital Mental Health Unit in order to speak to the Director of Mental Health to see if he could help.    I was getting concerned now at the length of time Elizabeth had been without the drug.  She was becoming drowsy.  It was not fair on her that she was having to sit around waiting hours only to be refused the drug time and time again.    We were this time waiting a long time to see a member of the social services team in order to do an assessment but then we were given the news by the Assistant of the Director of Mental Health that he could not come.  It was midday by this this time, so I ordered a cab to Harley Street where knew we would get to see a private consultant psychiatrist immediately and hoped he could help us.    On our way there I received a call from the social worker who failed to turn up and explained what we were doing and that I would be left with no choice but to take legal action individually against him and two others who appeared to be standing in the way of “treatment”.   Whilst I am not happy with the  “treatment” of my daughter who is mentioned in the files as being “chronic treatment resistant” and on a last resort drug (Clozapine) in this respect, I knew that if she was left without the drug much longer she could suffer injury.  I had to extend my holiday in order to deal with this problem.  I had been in contact with someone that day who is an expert on the drugs.  He advised me that if this situation was to continue any longer this could result in injury.  The rest of the family were pressurising me to return Elizabeth back to the care but this was against her wishes – why should she return only to be sectioned by the team and all the team cared about was her compliance to the drugs yet there was no problem in this respect. Elizabeth was becoming weakened by the deprival of this powerful drug but it was pointless me driving hundreds of miles to collect it when I had already been refused. On coming back from Harley Street where I had failed to get the drug, I telephoned lots of different firms of solicitors to obtain assistance for myself in this matter.    One major firm of solicitors had spoken to Elizabeth and the next thing I knew they were appointed by her but I still continued to look for representation myself, making phone call after phone call as the matter was now urgent but no one could help me immediately.

Wednesday, 14th May 2014:   – fourth day without the drug.

First thing in the morning the social worker contacted me wanting to come round to see Elizabeth together with a Consultant Psychiatrist.   Perhaps the threat of being taken to Court by me was enough for them to act.

That morning I had made a further attempt to get the drug from the local Lloyds chemist.  The Pharmacist was constantly on the phone.   He had no doubt been speaking to members of the team and the outcome was he said he was could not help me.

When I advised Elizabeth that the social worker would be coming at midday she said that she did not wish to see them as she was not feeling well.  She was by now experiencing withdrawal symptoms and described the effects to me. She just wanted to sleep and I had to really persuade her to come downstairs, explaining the importance of their visit.  The social worker arrived mid-day with the Consultant Psychiatrist and I was immediately asked to leave the room so Elizabeth would be alone with them.   I believed they wanted me out so they could do a capacity assessment but I refused as I did not feel this was fair on Elizabeth who was not feeling well having been deprived of the drugs for several days.  The capacity assessment did not therefore go ahead.  The consultant psychiatrist was left to explain about the titration process and how this would involve members of the Home Treatment Team coming to my home twice daily to monitor her.

That evening was the start of many visits by the Home Treatment team.  They would come mainly in twos, would check her blood pressure and administer the drug.  This meant that Elizabeth and carers had to be at home practically all day which was very restricting for her.  Sometimes they would arrive at midday and again at 6.00 pm.  It was because of this that I eventually requested that visits be reduced to once daily.   Bearing in mind I work in a full-time job, I had to rely on many close friends for help and support. They would come and spend all day with her.  A close friend reported back to me that she had overheard a nurse saying “it won’t be long before you go back to the care home and that her social worker was coming to get her”.  It was obvious they were trying to get her back.  Questioning by some members of the team was becoming more and more intrusive.  It was as though they were recording everything.    So, having agreed to once daily visits, the team then tried to take away the supply of drugs to resume twice daily visits which we had to complain about.   Several letters from social services addressed to Elizabeth were either posted through the letter box or handed to her via the Home Treatment Team who seemed to be used as messenger service.   On one occasion, whilst I was at work, a social worker came to the house with another member of the team and they attempted a capacity assessment in front of my carers but Elizabeth did not wish to co-operate. Elizabeth had given her carers notes by way of written proof that she wished to be at home but this was not enough for the team.  Suddenly we received Court papers that we were being taken to Court of Protection.  They wanted to sever contact/deprive liberty and section her (according to the files I have now acquired).  Elizabeth Suffers from Agoraphobia not having been out much in three years and despite this being a crowded environment she handled it very well.  Elizabeth also had a fear of heights and we had to go up to the fifth floor of the court by lift. I had to arrange private therapy for her to be able to attend court.  Whilst Elizabeth had obtained representation I had none, due to the cost for which I was quoted around £900 per month.   I was not entitled to legal aid.  Following Court, months later we were still waiting for the outcome of the court Hearing but there was no news so in the presence of Elizabeth, I telephoned her solicitors to find out when the next Hearing would be. We were then told that it was unlikely matters would be going any further and that the only thing left to settle was the solicitor’s expenses.  There was no mention of anything to Elizabeth, not even her fares have been reimbursed.  If the Council had been successful in the Court, they would have destroyed my family and affected everyone therein.  Elizabeth and her sister were terrified of the prospect of their intentions becoming reality and did not wish to answer the door on one occasion.   Elizabeth has seen the files which portray the family in a very nasty manner.   Elizabeth has not wanted to see the team since reading these files and who can blame her.   My carers feel the same way, especially in light of serious allegations which I cannot mention at this stage.

Titration of Clozapine is very risky and I can see from the files that Elizabeth suffered high pulse rates which “was of some concern”  They titrated her back up to the 350mg she was previously on and requests from both Elizabeth and myself to reduce the drug was ignored by all three psychiatrists involved.  The team ignored chose to ignore the fact that Elizabeth was suffering with what appeared to be signs of Tardive Dyskinesia.  When walking she would make jerky movements with her arm and she constantly complained of dizziness.

When Elizabeth told the Home Treatment team she no longer visits they ignored her and continued phoning and visiting regularly. It was noticeable that some team members had name badges back to front.

Both Elizabeth and I requested the medical files which we eventually received, the contents of which are shocking.  No wonder they did not want me to see them.  Apparently we were regarded as a “special case” and that the Home Treatment team ordered to go in twos and report everything back.

Words such as  “aggressive” and “hostile/angry” are frequently mentioned which is totally untrue.  There were even worse insults towards me. For instance certain members of the team tried to arrange a MHA assessment on me using my GP. It is not nice when the team pick on the appearance of my daughter and make awful comments.  Everything stated in the files was a means of discrediting me, in particular, the family and home.  I even called the Police due to the harassment we received.  The Police visited and commented that I had a nice home but that there was nothing they could do.

A new social worker has now been appointed.  To this day, we do not even know the name of the new Psychiatrist.  The transfer of care has not gone ahead as Elizabeth did not want to attend a prior meeting with the social worker and a nurse.  She was denied the chance to see just the consultant psychiatrist.   None of my carers wish to serious allegations on which files are missing.

It has been a year now since Elizabeth came home.   She continues.  We have no support but she continues to do well.  Elizabeth has a personal trainer that comes to the house twice a week which I pay for.  This is helping regain her confidence but she still will not go out anywhere alone and suffers panic attacks.  It will take her a long time to recover and she is now disabled in this respect although in the home she can manage well herself.  Elizabeth has recently done a jewellery course which she enjoyed and at the weekends I do my best to take her out as much as possible.  I have taken her to my conferences/courses and meetings with former patients who have acted as peer support.  It is good for Elizabeth to see that there are some wonderful professionals who wish to see changes as at the ISPS and INTAR conferences.    The support we have had is from close friends and from the former patients themselves.   Elizabeth is free go out as she wishes but sadly is a prisoner of her mind, too afraid to venture out anywhere alone due to the agoraphobia and feeling dizzy whilst out walking.

I have taken Elizabeth out with me in huge crowds but I notice there are good days and bad.  She is improving as when she first came she felt physically ill and sometimes refused to go out. “Schizophrenia treatment resistant” is just one of several diagnoses given to Elizabeth.  The team choose to ignore two others such as Aspergers and PTSD.  I would like Elizabeth referred to experts in the field of Aspergers and PTSD but this has not been done.  Right now “Schizophrenia” is being questioned by leading experts as being a “valid” diagnosis and “treatment resistant” means “poor or non-metaboliser.     I have therefore turned to leading experts in Rotterdam who have agreed to carry out metabolism tests as we have seen adverse reactions more than once. (results since then are poor/non metaboliser of psychiatric drugs) Also, no one cares about Elizabeth’s declining physical health and wish to keep her on drugs for the rest of her life so having these tests done should lead to a lower dosage or complete review.     I have asked for a referral from the GP but do not know if this will be possible as yet and I have been told I may have to pay.

Elizabeth has been on maximum amounts of concomitantly prescribed drugs which have led not only to adverse drug reactions which can easily be mistaken for “symptoms” of so called illness but more and more different labels were given.    I think it is  important for more accurate assessments to be given before putting someone on anti-psychotics in order to see if someone has any underlying physical conditions and whether they can metabolize the drugs.   Endocrinologist appointments should be given as a matter of course – there could be other reasons why someone suffers from psychosis. I would obviously like my daughter on the very least amount of drugs as do all the other parents who have sons/daughters’ stuck in the system on never ending prison sentences. Such patients can be sent to secure units and locked away when they have not committed serious crimes and “sentences” can last for years on end causing disablement and some never get out of the system as they are too weak to challenge things or even pick up the phone to speak to solicitor.  Solicitors do not go near such patients and represent them properly so I have seen.  I think this is  terrible and an abuse of human rights to drug someone for life ignoring underlying  physical conditions.  The only way such people are incarcerated for life is down to convenience as they could not cope in the community and even in care homes patients are drugged enormously and no one is properly looking into this fact.   I believe no one should be written off and Elizabeth is proof that home is the best environment but patients are sent to care establishments in order to control them and this is done by giving them huge quantities of drugs – just continuing what kind of “care” you would encounter on an acute ward where a patient admitted who is disturbed will first and foremost be drugged and where restraint and other forms of “treatment” such as ECT are commonplace.        Drugs are raised to maximum levels and prescribed concomitantly on a trial and error basis.    Patients can end up becoming inured through wrong treatment and this is why it is important that accurate tests are carried out prior to prescribing the drugs.

I believe the answer to the current situation is Open Dialogue.  Open Dialogue is supposed to be available for everyone now but that is not the case as you are excluded if you are in hospital – regarded as an acute case or already have a MH team involved. It is run through North East London NHS Trust called “Dialogue First”.  Care is not working and this can be seen with overflowing wards. Parents/carers are often excluded and if you dare to complain you can get bullied by restricting contact or even attempts to sever contact altogether.   I believe that P450 liver enzyme tests should be given to patients first before prescribing in order to determine the accuracy of treatment. This could save money to the NHS and benefit the patient and I believe that drugs should only be prescribed at minimal doses.

There is no choice in care and an acute ward is not therapeutic and can be noisy and frightening to some.  I believe that there needs to be choice available in facilities, some offering specialist care for PTSD but not in prison-like institutions like some of these hospitals are all about.  To avoid patients going to acute wards they should only be used as last resort then there needs to be something like Healing Homes or Care Farms.   I would also like to see an end to forced treatment of restraint/injections and ECT which I think is barbaric and there should be more therapeutic treatment on offer. Advanced Declarations are ignored which is very wrong. I believe that peer support is so important and that if Open Dialogue were adopted then former patients themselves, where possible, should be included.  There are cases where a patient can avoid hospital admission and only former patients could really understand what they are going through.  There are many who wish to be involved and help others but former patients are often ignored the same as carers are.    I feel that in some cases there are families who really do care and want their sons and daughters released from never ending sections.  I believe that it would be cheaper to increase carers allowance to such families and give direct payments and with the open dialogue approach this could see an end to the current situation of overflowing wards and patients being drugged forever.

I would also like to mention that vast sums of money as much as £12500 per week is being spent on private sector hospitals owned by multi billion dollar corporations and the Elizabeth has not benefit from any of this private all for profit treatment.  For that money you would expect proper assessments to be given and there not to be shortages of staff leading to patients not being allowed out.  Such places are little more than prison and they are just drugging vulnerable people and holding on to them for years trying to make as much profit as they can.  All this is being paid for by the taxpayer whilst NHS wards and other services are deprived of funds.

 

 

%d bloggers like this: