I do not know whether the C(E)TR will take place on Friday. Elizabeth does not even know herself and it seemed to be news to her that the C(E)TR was even taking place on Friday. I told her about it.
There are supposed to be advocates on the ward but every time I have spoken to Elizabeth I have got the impression she is without any support.
A meeting such as this that goes on all day so I have read would be terribly stressful to Elizabeth who hates meetings but lately has become more distressed at being stuck in hospital like a prisoner.
I as Nearest Relative only found out the C(E)TR by chance. I have been in touch with Nat Autistic Society regarding this but it was only when I wrote to Dr HM on Tuesday I received the link for the Teams meeting. It seemed as though NAS were having to chase up the hospital for news themselves by the looks of things.
Request for a C(E)TR was originally refused by the Commissioners who gave no reason except that only a CPA would be granted. I then desperately turned to Mencap and National Autistic Society. Elizabeth has a MH diagnosis that the current RC will not budge on whereas many other doctors have said she has Autism/LD and even brain injury is mentioned but other doctors opinions do not count with the current team whatsoever. This has led to Elizabeth becoming more and more distressed because no-one will listen to her. She has also said that no-one understands either.
It is coming up to a year now of incarceration (punishment she calls it) I would agree thoroughly. Punishment not just to her but to her family. There are times when Elizabeth says she no longer wants to live and that is why I fought to get her voice heard but a meeting such as this with a panel is like torture to Elizabeth and she has no independent support with her on the ward. The staff that sit with her through meetings are staff who write nastily behind her back and make her out to be dreadful. These same staff also write about her family and do everything they can to fail a tribunal. They are listened to by Judges who can be dismissive completely towards the family and in such private secret courts funded by public money cases are not always fairly heard and always the professionals opinions are not doubted. The reports are full of lies and errors and we have asked countless times for them to be amended.
When a vulnerable person such as Elizabeth telephones in distress and writes text messages and emails saying how unhappy she is, as a mother you try and speak up for that person who is surrounded by “professionals” who write so very nastily behind our backs. This has led to me being labelled myself yet again. All it takes a group of professionals to get together and start coming out with comments such as:
have been personally abusive or verbally aggress towards staff dealing with your complaint
have in the course of addressing or raising a complaint had an excessive number of contacts with the trust placing unreasonable demands on staff
Persist in pursuing a complaint when the trust’s complaints procedure has been fully and properly implemented and exhausted, or it is not within the trust’s remit to investigate.
Are unwilling to accept documented evidence of treatment given as being factural eg drug records, manual or computer records, nursing records.
Using abusive or threatening language
“Deputy Director of Nursing and Head of Patient Experience have reviewed your communications with the trust and concluded that in order to ensure all concerns are responded to through a single avenue, all correspondence from you will be managed under the trust vexatious complaints policy”
This then means that you are faced with a wall of silence. I only found out about the C(E)TR by writing and chasing up because NAS did not seem to know. The person I wrote to was my avenue of contact from ECRT who is Manager of the team. No emails or correspondence has been responded to by this person and the next thing I had heard from the RC of Suffolk Ward directly about the C(E)TR but all got was the Teams link. I did not know who was who. Every email address of the attendees seemed to be from the NHS apart from one who I confirmed was the person of experience.
The C(E)TR panel consists of:
• A chair person – the commissioner who pays for and monitors your care
• An expert by experience such as an autistic person, a person with a learning disability or a family carer
• A clinical expert such as a nurse or psychiatrist
People in long-term segregation may have an Independently Chaired C(E)TR. This panel will be chaired by an independent person who is chosen by the Department of Health and Social Care. I am assuming this is why someone from a different CCG is Chair.
The usual panel members will still be there along with someone who works for the Care Quality Commission (CQC). I could not see anyone from the Care Quality Commission amongst the attendees as this would give some reassurance.
The only things that will be different in your C(E)TR are:
• If you have a video meeting, you can see people who cannot visit you on a screen instead of in person. It is your choice whether or not you want to be seen on the screen. It will be done by video link.
• If the C(E)TR is by phone, you will not be able to see those people but you will be able to hear them.
• The C(E)TR might not take a full day, because of other urgent work NHS staff are doing at the moment.
We will make sure people get a C(E)TR quickly if they are:
• At risk of going into a mental health, learning disability or autism hospital. • Children and young people in these types of hospitals. Yes the RC of Suffolk Ward wanted to send Elizabeth away to yet another locked facility (Priory) not sure if this was Darlington or Hemel Hempstead as a bed had been found for Elizabeth at Darlington on Xmas Eve.
• People cared for away from other people for a long time – this is called long-term segregation Elizabeth would come into this category as this is what their plans are to take her away from her family to establish her greater on medication.
• Anyone admitted to this type of hospital during the coronavirus outbreak who is autistic or has a learning disability. Yes unfortunately this applies to Elizabeth because although she does not have an official diagnosis so many other experts have said this is what she has but she has been denied a proper assessment for so very long.
If you are in this sort of hospital, your commissioner will keep in touch with you and your care providers in other ways too, to make sure you are safe and well cared for. All the commissioners in this area have done is spend a fortune on public money on very wrong facilities one after the other who have done nothing for her except make her more traumatised.
A good C(E)TR is as important as ever We understand this may be a difficult time for you. You may feel on your own more because of the outbreak, or you may be unable to meet family or friends. Perhaps your staff support has changed? Or your healthcare, or your education? If so, how does this make you feel? At this time, it is more important than ever to check you are OK and getting good quality care, education and treatment. “I am stuck here now. I wish I was never born” .
Top tips for a video C(E)TR We want to make sure your C(E)TR is as good as it can be.
• A video meeting can feel a bit strange if you have not done one before • Many people prefer them to a phone call, once they get used to them
• If you are new to video meetings, why not try one with someone you trust? • Planning for your meeting will help you a lot on the day. How can that be when surrounded by a team of professionals not on her side and with their own agenda.
• Please use the planning form in this booklet to help you get ready for your meeting. I doubt whether Elizabeth has this booklet or anyone on the ward to go through it with her.
• You can record what you want to say if you like – in writing, pictures or a film clip to show at your C(E)TR. I have tried to encourage Elizabeth to write some things down but now I do not know if the meeting will go ahead on Friday. This was all organised by the RC of Suffolk Ward.
• If you need any help or have any questions or requests, please ask someone who supports you. How can this be when Elizabeth has no help.
• Don’t forget to sign the consent form! I am assuming Elizabeth has signed the consent form.
The main questions in a C(E)TR can help with this. We have improved these questions, called Key Lines of Enquiry, after feedback about them. For now, we will also ask a question about how you are getting on during the coronavirus outbreak. The Key Lines of Enquiry questions are:
• Am I safe? No not in an environment where possessions go missing and male staff alone give the depot.
• Am I in the right place for my care (education) and treatment? absolutely not in fact she is piling on weight and now a size 24 deprived of fresh air/exercise for many months on an Amber Covid Assessment Ward.
• Are my plans for my future going well? No because Elizabeth is destined for a locked ward away from home and family when she wanted to come back to her flat and that is because ECRHT state they cannot find anyone to work with Elizabeth but I HAVE MANAGED TO. In the flat below is a lady who has full support in the community with support workers and I met with one of them who I was most impressed with. I have relaid this to the team but as usual no response. The carer not only has years of experience but knows Elizabeth and seems to have all of the right communication skills but consistently ECRHT have denied direct payments and so Elizabeth is stuck on a ward when she could be back in her own home thanks to ECRHT and this is costing over £3000 a week to hold Elizabeth when it should be trialled to see how things work out with the new carers.
• Is everything supporting me to have the best life I can – now and in the future? Absolutely not and never has been ever. These are professionals who dismiss other professionals opinions and Elizabeth will never ever be treated fairly.
• And the coronavirus question: Is everything being done to support me well during the coronavirus outbreak? The Coronavirus has been the excuse to stop all leave and visits and the excuse to abuse human rights. For instance I gave a list of physical health appointments – I believe Elizabeth was taken to the dentist but this requires hospital for wisdom tooth removal none of which I believe has been arranged. The other appointment was Ophthalmology at a local hospital. She was not taken and a message was left too late for me to take her myself because whilst I am banned from visiting a health appointment is a different matter apparently. Whilst I am being punished for so called non social distancing on Xmas Day when I was not advised of changes and a bed had been found at Darlington so it was proposed to move her, all of a sudden I am allowed to take her to the eye appointment at the local hospital despite Covid.
A C(E)TR is not part of your day to day care.
It is a review, or a check, to make sure your care is going well. And to see if it can be made better. The “care” is completely wrong and is NOT GOING WELL. I am not sure anything can be rectified if under the current MH team in this area.
Most people find them really helpful. But Elizabeth will find it all a huge ordeal as she hates meetings.
You can invite family carers, an advocate or someone important to you if you want to. You may be offered a C(E)TR another time. I am invited but I dont know what is happening now since I had advised NAS that PowHer Icas had finished with Elizabeth and they are aware of lack of support from this organisation from their own enquiries.
You will be asked for your consent each time. There is conflict of opinion on capacity. A capacity assessment should never be carried out by the treating team who can manipulate matters purely on the basis of stating she has “no capacity” when it suits them and bearing in mind Elizabeth says they do not understand her – there are language barriers and this is why a speech and language therapist should be appointed.
Your commissioner has a duty to offer you a C(E)TR. But this was refused by the local Commissioners and the reason is because Elizabeth has a MH diagnosis they do not wish to budge on for the sake of convenience and to continue the current treatment for the rest of her life in locked facilities. It is only thanks to Mencap and NAS/Access that Elizabeth is being listened to.
You should be asked for your consent at least 2 weeks before the C(E)TR happens. This must have been given but if the consent had not been given bearing in mind the files stated no capacity then I as POA would have given consent instead as any glimmer of hope right now in getting fairness for the first time ever would be great.
This is consent to share your information with the C(E)TR panel and people who are, or will be, involved in your care. In the community it might happen in an emergency, and you might get less time to decide. If you say yes, this means you give your consent.
It means you are happy to have a review of your care. If Elizabeth sought help from the Integrated Learning Team on her own accord prior to Xmas 2019 this shows she would desperately like to be heard.
If you do not want to have a C(E)TR, you can say no. Saying no will not affect your day to day care. God forbid!! What care exactly when her physical health is not being attended to. It is also distressing to be on a noisy ward as Elizabeth has sensory issues.
What sort of information will the C(E)TR find out about? • Your care and treatment now. This is locked up, denied freedom, denied exercise, denied right to family contact outside the ward, denied an autism assessment. Being mocked, being coerced and gaslighted.
• Your health, including your mental health and physical health. Going downhill now a size 24 obese due to lack of fresh air and exercise.
• Your medication if you take any: Forced injections administered fortnightly where she is pinned down and sometimes this is by men only. She is on max levels of drugs that are doing nothing for her. The drugs are causing irritation to her skin and pains to her fingers. The drugs are making her ill physically and very up and down emotionally. Why put her on max levels??? to ensure she never comes off them and that is the reason they are holding on to her for a matter of convenience.
• Any health and care plans for you in the future – Elizabeth has consistently been denied her care plan. She has also been denied her drugs chart to look at. The fact she was not informed of the C(E)TR and was asking me for news sums up how vulnerable people are treated, not forgetting their families – in other words like nothing.
• Where you live now and where you would like to live. Elizabeth has said many times she would like to go back to her flat but this is being denied by her care coordinator from ECRHT. They have failed to provide any care in the community from the very start when she acquired the flat. The excuse was no-one could work with her and she must be on medication. So they have got their way but despite this, there is still the excuse that no-one can work with her so how comes I have found carers so easily who have the necessary skills to work with my daughter and who even know her and are not put off. For ten years + I kept my father with Alzheimers out of care by providing the care myself through direct payments. All I had to do was keep the paperwork. My father paid partly for care himself but through the night late afternoon he needed additional care which worked out much cheaper than residential care. In Elizabeth’s case, it would appear they do not wish to provide care in the community yet have plenty of money to take me to court for displacement of NR and I was happy to represent myself in court and would do so again if necessary. So funding comes from a different source and they are saving money in their Department:
I have in front of me an email from NJ to a previous care coordinator copying in MA, LO and LS dated 07 November 2012 at 10:23 – it says “I have no doubt this patient would benefit from a hospital environment. If that is the desired plan from the MDT then what is required is that we need to demonstrate that the MDT has identified the exact needs and the expectation of what the MDT wants from a placement and the timescales for this to happen, also what they want from the providers eg weekly report copies of all assessment, how often care coordinator will visit the patient, also what will be checked on at each CPA etc. What the panel do not want to see is that this aspect of identifying the needs and how this would be managed or not, done by the potential placement. We need to skilfully set the agenda of what is required to bring about a change for the patient. Hence the request for a medical review in order to obtain a comprehensive plan regards to what medical input would be helpful that we cannot manage in the community. The same can be said regards to the assessment as to why 24 hour supported accommodation is not working either is staying with her mother.
We have to be much more robust regards to why institutional care would absolutely benefit this patient. In a nutshell it is all about providing why your assessment as Care Coorindator is paramount in setting the agenda of care needs required.
My apologies for not directing you more clearly however my meeting with both LS and Malcolm has sharpened my understanding as to what is required for a case to be successful at panel.
The previous care coordinator states “presently her life is at risk of severe self harming behaviour and getting into trouble with the police she could be end up dead.”
The above care coordinator, MA, was one who we know well and was involved in Cambian Wales alongside another social worker EJ and the above comments show how little they know of my daughter and how on earth can they judge as to what is best interest when I have proven through four months care I provided privately that Elizabeth could be helped by professionals who take the right approach and in the right environment. Elizabeth came back unrecognisable and was allowed to go out on her own in Australia and France.
• What makes you feel anxious or upset In Elizabeth’s case not being listened to and the threat of being sent far away and being left behind “don’t leave me behind if you move”.
• What helps you feel well – peace and quiet surrounded by animals not professionals who do not understand or in a noisy environment such as Suffolk Ward.
• Anything which is about keeping you and other people safe. Nothing
The C(E)TR report can only be shared with:
• You and people important to your C(E)TR.
• People in charge of your health and social care who are or will be providing or paying for your care.
• People in confidential care meetings like Care Programme Approach (CPA) meetings or Mental Health Tribunals.
• If the report says you or others might not be safe, some or all of your C(E)TR report may be shown to people who the law says must look at it.
• Everyone must keep your information private and safe.
Anonymous information from a C(E)TR may be shared with other people in the NHS. This information does not include your name or any other information which could identify you. Anonymous information helps to make sure that people’s care and treatment and C(E)TRs are going well.
The C(E)TR panel wants to know what you think about your care. They will ask other people too.
Use the planning form that follows to get ready for your meeting • Ask a family member, staff or advocate if you need help with this
Planning my C(E)TR My name is _________________________________________ The date of my C(E)TR ____________________________________
- What is important to me eg. hobbies, friends, family, every day? 2.
- Am I safe?
- Am I in the right place for my care treatment? What is good now? What could be better?
- Are my plans for my future going well?
- Is everyone supporting me to have the best life I can – now and in the future?
- Is everything being done to support me well during the coronavirus outbreak? How to make my C(E)TR go well Such as, things you do or do not want to happen on the day, any help you need with the meeting, how you want people to communicate with you.
- On the day of my C(E)TR The next two pages are about making your C(E)TR good on the day. ✓ You are the most important person in your C(E)TR. ✓ The C(E)TR panel, staff and others will do everything they can to make it a good experience for you. ✓ They understand what it feels like to have a C(E)TR. ✓ You can ask questions whenever you like. ✓ You can say if you need anything or if there is a problem. Things that might help
- • It is OK if you do not know if you want to talk to people on the C(E)TR panel.
- • You can take your time to decide on the day.
- • You can talk to just one person if that feels better.
- • Or you can say hello first and then decide if you want to speak to people later.
- • You can have someone with you like a staff member when you talk to people. Or you can meet them on your own. You can choose.
- • It is OK if you want to stop or have a break.
- • You can say if you are unhappy about being on video yourself and just speak to them without this.
- • It helps the panel if they can talk to you as well as people providing your care. And if they can talk to your family carer or advocate.
- • You can talk to the C(E)TR panel in the way that is best for you.
- • You can speak to them in private if you like.
- • You can say what matters to you and what you think.
- Care and Treatment Review Feedback Form This form can be used by anyone who took part in a C(E)TR. Your information will be kept safe. You don’t have to tell us your name or date of your C(E)TR, but if there was a problem this will help to get it sorted out. Please fill in this form and send it to the chairperson of the C(E)TR. Name Date of C(E)TR If you want someone to reply, how can they get in touch with you?
- Did you get enough help and information before the C(E)TR?
- What was the C(E)TR like on the day?
- What would have made the C(E)TR better?
- What difference did the C(E)TR make for you?
- Have you got any other comments or questions?
- My C(E)TR Report You should receive your C(E)TR report from the C(E)TR chair within 2 weeks of your C(E)TR. It should be written in words you understand. If anything is not clear, ask someone to help. You can write what needs to happen here if it is useful. This can help you check that these things are happening on time. What needs to happen? By when and by who?
I have fought to get the C(E)TR for Elizabeth who has constantly said she is not being listened to. I am concerned that she will not be prepared for the C(E)TR due to lack of support from any advocates.
My comments would reflect hers and this is a meeting where she will be centre of attention – my concerns are that it will all be too much for her as she does not like meetings and her voice will not be heard because even though there are representatives of other NHS Trusts I cannot see anyone from the CQC or from outside of the NHS apart from one independent panel member of experience. I am worried that this may not be done fairly in the absence of the CQC or advocate.
I doubt whether I will have much input because this is after all Elizabeth’s chance but the fact is that when I have reflected her opinions this has led to the current situation of no communication from even the points of contact I am allowed as being labelled a vexatious complainant when all I have done is echo what Elizabeth has been saying and have tried to fight to get her treated fairly.
I keep an open mind as to whether this can be achievable by way of a C(E)TR but I have made a decision myself about my life and where I want to be bearing in mind the effect all this is having on my health and what happened to me a year ago.
Whilst I am posting this regarding a C(E)TR I do so because I had never heard of this before. It is only down to social media contacts who have advised me but because Elizabeth has been denied the autism diagnosis in all this time, this would not normally apply to her but now there is such conflict of opinion from other professionals this has proven necessary. I wish to thank Mencap and National Autistic Society and Access for their assistance.
Whilst I have written openly I would not of course be writing about the actual C(E)TR itself and naming panel members etc.
I do think such things as a Tribunal should be made open and transparent though without the threat of prison.