OPEN DIALOGUE UK

The message below was written by Dr Russell Rassaque as I was making enquiries whilst Elizabeth was in Cygnet Private Hospital.

” Our Open Dialogue service is not taking new local referrals and does not work in an in-patient setting yet either or with anyone on section. It’s just starting and we are slowly bringing it online step by step.

The best thing I can suggest is that from May 4th we will be taking new referrals from people outside our local area (anywhere in the UK outside our own boroughs in N,E, London). However, new patients will need to be referred through primary care after discharge from the local service. If you’d like to pursue this please can you email my colleague Cathy Thorley who will manage this new arm of the service on; Catherine.Thorley@nelft.nhs.uk

She will be able to discuss it with you in more detail and how to get referred (without moving – in fact, it help if you stay where you are). Hope that’s ok and, if all works out, perhaps seeing you after May of this year.

Wishing you all the best”

 You can imagine how overjoyed I was at hearing that open dialogue was being extended to include everyone and I would have been prepared to travel to the two locations that North East London hold meetings at.  I was overjoyed at the prospect of being able to have more frequent meetings but most of all that once transferred we would be working with professionals in an open and transparent way.  No more exclusion and playing on confidentiality/capacity but working together as a team.
I had been in touch with Cathy Thorley several times and found out that you have to go through your GP for this service and once Elizabeth was released we did just that.
Unfortunately I received a response from Cathy Thorley to say that we would not be considered to be suitable for transfer to this scheme as we already had a team involved of mental health professionals.    What a joke this is –  I told her that for the past two years + we had no support from local professionals in my area of ENFIELD MENTAL HEALTH – at least there was no one we could trust as we had seen all their nasty comments and what they were doing behind our backs.  How can you trust people like this and it is a pity that ENFIELD are an area that are not considering Open Dialogue as this could vastly improve everything in an area where care has failed.
So, disappointingly we are not considered suitable –  it would seem only a selective few would be considered suitable for Open Dialogue UK.  Not what I expected and we could have worked so well with professionals that we trust.   As Dr Bob Johnson says “Truth Trust and Consent”  – this is what is missing within the UK’s mental health system. It would seem that the only way you can be included in Open Dialogue UK is to move to another area where they are wishing to improve the failing system of mental health care and if every area was to adopt this attitude then there could be more success.
I know it is early days for this system of Open Dialogue and many professionals are stuck in the dark ages and not willing to move with the times – pity as when we were associated with being in crisis, I did not see things this way.  Elizabeth had come out from Cygnet, not on a section but was on a new drug Abilify and if we had seen psychiatrists from another area we have received fairer treatment.  I suppose it is all down to red tape and funding.
Much has happened since then and we had Elizabeth home for a month or so on 20mg Abilify but sadly she was not the same person any more.   Without a care plan or any help or support from professionals in my local area ENFIELD, I tried my best to find counselling but the kind of counselling I was trying to get for Elizabeth was completely overwhelmed with demand and there was a waiting list.  There was the problem of getting someone suffering from Agoraphobia to appointments and I was desperately thinking who could take her – planning to put one of the carers on my driving insurance as I work full time.
So much has happened, some of it too painful to write here but if we had received support rather than the approach we encountered from professionals the current situation would not have arisen as there needed to be extra assistance.    It seems like money is available to spend on private care providers who run supportive housing schemes rather than give a bit of help which would have been much cheaper to the family.   Housing benefit is not payable to a family so there is huge savings if someone remains at home but various providers apply for these benefits in order to provide their services.    Some are good – some are bad.  I look forward to reporting more as time goes on.
Elizabeth is now 29 and for the past month of being at home she was refusing to go out, was not feeling at all well on the drug Abilify at 20mg.  Sadly Elizabeth is not now living at home – the drug Abilify is a very highly dangerous drug and Elizabeth is a poor/non metaboliser of such drugs.  This has nothing to do with so called mental illness.   Elizabeth is not in hospital but in a scheme with others.  It is too early to comment on this scheme but already Elizabeth is not living so well under this scheme.  I have visited her a few times and seen that diet is slipping, others smoke and basically it seems like they are left to get on with it.   Like I say,it is too early to comment but there is not many young people there at this scheme and that is something that Elizabeth wanted I know for a fact.   I am paying for private psychotherapy as nothing is provided.
Anyway, we have a meeting on the 24th and it is not just me who will be complaining at everything that has happened over the past years. I also will hopefully meet someone else that same day – someone who has come over from America and has a tight schedule but has agreed to see me.  Cant wait to meet her and hope that something good arises out of this meeting.
The kind of care most parents would like to see is emphasis on healthy living.  Diet is so important but not enough support is being given for people like Elizabeth to cook healthy meals and they are instead left to buy takeaways or smoke for instance.  Environment is so important and a natural environment with alternative therapy available and counselling/psychotherapy- one to one support for those that have come straight from hospital instead of just being left to get on with it and ending up back on the wards.  Peer support and inclusion, open dialogue.  A team of professionals who work with not against you and who are open and honest in their approach.   If only we had something like this in the UK but unfortunately that has not been our experience so far.
I hope projects like Chy_Sawel and similar can be set up and I am looking forward to this important meeting to take place on the same day as the hospital meeting.  Finally, Enfield Mental Health are looking at our complaints externally and I am bringing with me the shocking files.   I would be most surprised if anyone could get away with saying SATISFACTORY OR EXCELLENT CARE after reading the contents and comments therein.

 

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2 comments
  1. Anonymous said:

    I’m so sorry for Elizabeth and really relate to her treatment by the mental health services. After being in hospital for 5 years and not receiving any therapy, instead being pumped full of a heavy duty drug which I wasn’t consenting to, I think being “left to get on with it” sums it up.
    I have been in touch with dialogue first and wanted to fill you in with some details after reading this. Dialogue 1st can not see anyone during crisis (although they would like to) because they haven’t been given permission i.e. funding. They do accept people from Enfield. If you can travel, they accept people from anywhere in the country. Here’s the tricky bit though. The funding body (The CCG) for mental health services claim that you are not allowed to be under a mental health team to qualify for treatment from open dialogue i.e. you need to refuse treatment from your mental health service. The funding body claim this is because they cannot fund two treatments at the same time. This is bollocks as all they need to do is allow the psych services to refer a patient to open dialogue (as is there legal right under “patient choice” legislation, 2014) but they have insisted that you must be referred to by your gp. There is no other way to receive open dialogue treatment, unless you have refused treatment from the psych services (for whatever reason, it’s your right).
    The truth is there is resistance to open dialogue from the “industry” from 1) the commissioners, because it is initially expensive yet would save a lot in the long run with it’s tried and tested success rates. 2) the psychiatrists who would lose their power and with it reduced salaries. 3) call me paranoid (haha) but the drug companies, who want to keep people well, but only well enough so they can keep making dollar.
    My local ccg have misinformed my gp’s that I must be referred back to the psych services to get a referal to dialogue first. Dialogue first are now directly in contact with my surgery to correct the ccg. I will reiterate, there are only 3 restrictions to the service 1) You are not allowed to be in crisis. 2) you must have refused treatment from the psych services (for whatever reason) 3) you must be referred by your gp.
    Call this number if you’re having any difficulties getting refered 01708574004. Keep up the good fight open dialogue uk!

    • Thank you for your comments on Dialogue First. I am fully aware about the criteria but Elizabeth at one time met the correct criteria having come back from wonderful care in Australia. She no longer wanted anything to do with MH services and she had been discharged from their team to primary care (her GP) Dr Manish Kumar of Willow House Surgery in Enfield. He was well aware of Elizabeth’s wishes along with her family to be a part of Open Dialogue as we had taken part in this at one of the conferences I took Elizabeth to through ISPS. Sadly for some strange reason he declined to refer us. We had nothing – no help – no support in the local area of Enfield. It was not the plan for Elizabeth to come back to this area but when you provide the most wonderful care and someone comes back well – we’d never seen her looking so good and she wanted to have a job etc. She was cooking every night. She was trying to budget and make her own appointments. To us it was money well spent and made up for the many years of being incarcerated in various shocking institutions. The GP failed to refer us and had everything in writing. If we had the support of a team we could trust then things might have turned out differently. There are no rights in the UK – unless you can afford to spend a fortune privately on solicitors. We were prepared to travel and all Elizabeth wants is for her family to be together and included in meetings. Sadly a team of professionals can do more harm than good especially when they clearly do not like you.

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