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.
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).
- 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.
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;
- not clear;
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
- 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”:
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.