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.