IT’S ALL ABOUT PROVING YOURSELF AS CARE COORDINATOR” BY NORMA JOHNSON

In an email to care coordinator MA copying in the Director of Psychosis I outline exactly how they operate:

From Johnson Norma

sent: 07 November 2012 10.23

cc Ahmed Monowara; Omezi Lucy cc Saunders Leigh

RE: REHAB PLACEMENT

Dear Monowara

I have no doubt that 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 assessments, 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 skillfully 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 nut shell it is about proving why your assessment as Care Coordinator is paramount in setting the agenda of care needs required.

My apologies for not directing you more clearly however my meeting with both Leigh and Malcolm has sharpened my understanding regards to what is required for a case to be successful at panel.

I hope you have found this useful

Kind regards

Norma.

Email from Ahmed Monowara

Sent 06.11.2012 at 12.33

To Johnson Norma

Rehab Placement

Dear Norma

I am familiar with the placement suggested by Olu.

Recently I have a client who has been discharged to this care home from Kneesworth Hospital. The placement was identified by Paul Gill.

Given the history of MM I do not think this care home would be beneficial for her. This could be a future placement after receiving support from hospital settings where her problem can be identified and find a way of management strategy how she can be managed safely in the community. Presently her life is at risk of severe self harming behaviour and getting into trouble with Police. She could be ending up Dead

Regards monowra.

It is sad reading the above especially when there are so many errors recorded in file records. Elizabeth has never self-harmed, apart from a few scratches to her face. They have failed to protect her under care, previously highlighted under 24 hr provision where staff slept through the night.

For four months, we, the family provided wonderful care through “Working to Recovery”. Taken from Elizabeth’s diary notes, this appears on Rightful Lives on-line Exhibition.

I was working full time but for the first time felt relaxed knowing my daughter was being treated like a human being and in a safe place and good environment. She stayed at the family home in Scotland before going on holiday to France and Spain with them. Considering so much time having been institutionalised, she was starting to show improvement as a result of being in a peaceful and healthy environment. I was so happy for her staying with a decent family, receiving the right care which included psychotherapy, art therapy, music therapy, home cooking, freedom to go out and not caged like a prisoner. Her confidence began to increase and after two months she requested to go on holiday with them which I was happy to provide. Instead of drugging to the hilt they worked with her and she started to open up and reveal her suffering under a scheme called Moti Villa. For the first time she was able to express emotions freely. She had company of around her own age staying in the family home and throughout France and Spain was not treated like a person, not an object. She went out and about by herself and even learnt to communicate in French. Ending up in Paris she attended a conference and was taken out for a meal with French psychiatrists who were apparently fascinated. When she came back to Scotland she was offered the opportunity to go to Australia and amazingly agreed. When the plane landed in Dubai Elizabeth was overwhelmed. I was so happy to receive a call from her saying she was in the luxury airport lounge and the food was fantastic. I believe they flew with Emirates and she got a glimpse of Dubai before boarding the plane to Perth, Australia. Single handedly a former MH nurse of many years experience accompanied Elizabeth on the journey to Australia and took her on holiday. It is all about how someone is treated and down to good communication skills. Unfortunately, so many professionals do not possess these skills or else staff shortages on the ward impact upon the ability to spare time to communicate and a quick fix of rapid tranquilisation of a patient means peace and quiet to them.

In the community schemes provided under Enfield Elizabeth was severely neglected. At the care home mentioned she was not on CTO but it became increasingly apparent this was being arranged. This care home was about an hour’s journey away but easier to get to than Wales. Whilst at Cambian, Wales attempts were made to get rid of me as NR and to sever contact by taking the phone away. Luckily at the time I had solicitors involved but now it is virtually impossible to get that kind of support.

The story “My wonderful Care” details a trip of a lifetime where Elizabeth worked with professionals both local and international as well as peer support workers, musicians and art therapists and everyone took part in chores etc. There was a graduation party before return back to the UK. How I wish she had stayed there in Perth and had not come back to a situation where there was no continuity and no provision whatsoever in the community. When she returned she wanted a job, she was able to express herself clearly. This was all back in 2016 just before Xmas and she was unrecognisable and not suffering from anxiety.

Prior to 2016 I was taken to Court of Protection. This was sprung on me at short notice whilst I was working. I can’t praise the Court of Protection high enough. The Judge showed Elizabeth around the court room before proceedings began. At the time Elizabeth had a fear of heights and lifts so in order to alleviate her anxiety I booked a therapy session with Susan Hepburn of Harley Street who she had seen once before and was able to really assist successfully.

“We recommend Mental Health Act assessment for the mother with the help of GP to be organised by the Rehab Team.

SOVA to be raised

Consider physically separating them through legal process, transferring Elizabeth back to Northampton.

Consider transferring Elizabeth’s care back to the Rehab team.

NB Staff to be aware that Elizabeth’s mother is documenting all visits by staff on her blog: psychiatric abuse UK.

Originator Jalonen, Esther

21 May 2014

T/c with HTT (Managed by Dr Helen Moorey) who went on to be RC of Suffolk Ward with an aim to request rehab team to accompany them today on their morning visit.

PLAN joint visits by HTT and Rehab Team and establish Elizabeth’s mental capacity.

I received a telephone call whilst at work that Elizabeth and her sister were hiding in a cupboard because social services were coming round and knocking on the door. “what shall we do Mum” – in the end luckily there was a friend of the family in the house who answered the door to say the girls were out.

Following decision by CoP Elizabeth was allowed to come home but prior to this was another case “Deprival of Medication Community Care” – Irwin Mitchell.

The whole experience of living under Enfield has been like hell on earth and during lockdown it made me think seriously about whether I wanted to remain in that area as I knew nothing was ever going to change. However little did I know that even in a new area the grass is not greener on the other side and sadly it doesn’t matter where you live in the UK there appears to be a culture of bullying throughout the NHS if you as a carer/parent dare to complain.

There is supposed to be a care act assessment taking place but I am excluded. They say they will take into account my comments on the Care Act assessment form. I found when completing this form that many of the questions did not apply. How can you talk about goals and education and work when someone has deteriorated to such a massive extent over 19 months held on an acute ward with no end in sight. Maybe the care act assessment has been forced upon my former local area who unknown to us are still responsible for providing the S117 aftercare.

I was blamed for stopping the depot when moved to the new area but was able to produce evidence to the contrary. I was then subject to lengthy investigations by the Public Guardian Office alleging neglect and abuse. However this went in my favour.

Who is going to listen to a parent when so many professionals back one another often contrary to their own Codes of Conduct. “it was not my decision but that of the MDT” – in other words no accountability. I have acquired extensive records and investigated everything thoroughly.

It is exhausting to constantly have to stand up for yourself in a culture of bullying and this is how I see myself as being treated as well as my vulnerable daughter who clearly wants to come home to the detached annex in my back garden.

There has been no assistance for adaptions and it would appear the MDT never had any desire to work with myself as mother/carer and it has become apparent that they wish to institutionalise her into care they provide and possible out of this area which would be very upsetting to everyone in the family.

On the ward it has been mentioned there have been “episodes” – seizures. The episodes are not of violence but triggered by extreme distress most probably cause by the enormous restrictions in place. I never encountered any violence at home whatsoever but the seizures could also be the cause of the cavernoma and lesions shown on private scans and noted as far back as 2007 . I attempted to get adaptions such as stronger bed but was told this was not possible as Elizabeth was still held in hospital after 19 months Elizabeth she is still stuck on an acute ward. Almost 30 people are recorded in invitations to attend an MDT meeting excluding family.

When complaints remain unresolved there is the option of Ombudsman/PHSO but I only have 1 positive outcome and that was on safeguarding under Enfield who held several section 42 meetings behind my back. Thankfully Elizabeth gave me the minutes which I reported to Police.

As for the Police and Ambulance services Elizabeth became one of the highest callers in the former area but trusted them and regarded Police and Ambulance personnel to be her friends. In the absence of any care in the community or provision such as direct payments which could have avoided all of this but was never offered and neither was a care act assessment in the former area.

I wish there was a system of openness and transparency within the MH trust with Open Dialogue instead of exclusion of family and carers. The MDT are exclusive to professionals and decisions based on best interest due to their conclusion of no capacity which is highly disputed.