On Saturday last week I took Elizabeth to meet other mothers who would like to see an alternative to just drugging by way of a specialist centre that treats patients as individuals and gives proper assessments and unique care based on nutrition. These are a group of mothers/some fathers who have sons/daughters trapped, incarcerated long term on acute wards and in care homes, some being placed a long distance away from home and these parents would like to see change in a system that is failing – you only have to look at the overflowing acute wards and demand for “care” and patients do not seem to be getting better and end up in the system long term. Many patients along with us parents are upset to see a system that is abusive. Forced drugging – exclusion of families and coercion by staff. Not every case of long term imprisonment is because someone is a danger to themselves or others but because they are so weakened by the drugs they cannot go through with a tribunal or have lost the strength to speak out and they end up becoming dependant and under control and disabled by being institutionalised. I do not think that labelling helps and believe this to be the cause of stigma as once you get a label it is for life – this is totally wrong as people get better despite being given these shocking labels and the public are being misinformed as many cases of psychosis are caused by the drugs that a patient is prescribed. A patient may have an adverse reaction to a drug because they cannot metabolise the drug and nothing is done in the UK to test this before giving drugs to patients. The system itself allows for the weak and vulnerable to be used as human guinea pigs and the main “care” is drugging and ECT and I think the system is in desperate need of change. Dr William Shaw PhD of Great Plains Laboratory was speaking at this conference held over two days in conjunction with Bio Lab. I bought a book entitled “Biological Treatments for Autism & PDD” by Dr William Shaw Ph.D. It was good to see the other parents who I have met with before on other occasions. It was good of Dr Shaw to spare time to meet with us and I would like to see him involved in the care we wish to see. I have already had several tests done at Bio Lab and it is wrong of the NHS to dismiss such tests on physical health that clearly show decline. Whilst Elizabeth was in Wales I presented these tests as evidence – I was hoping that Elizabeth would have holistic care but it was far from this and now I see that the private sector care is no better at all – it was wrong of them to carry on with the Metformin being given off label for weight loss Well after meeting Dr Shaw I am really determined to look further into matters. I am looking closely at diet and nutrition and the GP is referring Elizabeth to a Nutritionist. However already physical health problems have come to light and the Bio Lab offer tests unavailable under NHS. The tests are not expensive compared to the cost of long term incarceration of patients who are not getting better on acute wards. If such tests determine food allergies/gluten/lactose intolerance/infections and other problems then this could save money as proper attention can be given to diet/nutrition, etc. Unfortunately in respect of Chy Sawel it comes down to funding and we discussed ways in which to raise money for this unique centre to be set up and suitable premises have been seen in Cornwall and I hope these premises can be acquired. There is huge demand for a unique centre offering with strong emphasis on nutrition and minimal drugging and a different, more humane approach that properly assesses a patient on an individual basis. This is what we all want and it would wonderful if we had choice in this country. Whilst Elizabeth has adapted well coming back home after years in the system, ultimately environment is important and I believe an acute ward can be traumatic and stressful for a patient who could benefit more from being in a peaceful/ natural environment that offers a completely different approach. There are many assumptions surrounding family if someone within that family has a MH condition and this is why I would like to see Open Dialogue.. It is wrong to make assumptions and it is wrong the way someone is put under pressure by a team to say things against the family – if for instance the team do not like you because you have had cause to be outspoken then this is reflected in the files. Psychiatry is based on belief/ assumptions and it is incredibly easy to get a diagnosis by way of what they call symptoms. There are plenty of labels to give in the DSM. If something is bad written in the medical records by one expert then others will go by this- it is a vicious circle. No-one really cares to take account of what happened to that person in the first instance and that, together with treatment of drugs means that person may not get better. Instead counselling and alternative therapeutic care should be given. I am in favour of OPEN DIALOGUE. The drugs should only be used short term only and not forced upon anyone.
On Sunday, Elizabeth was tired as we did a lot of walking the day before so I went alone to the Good Food Exhibition held at Olympia which was very good. I am thinking of cancelling the gym as she is not using the facilities – it is a waste of money – there is no help in getting her there and I am paying for a personal trainer to come round to the house. I understand my daughter has asked for extra sessions but it awaits to be seen if this will be provided for her. There is a new Yoga and Pilates studio which may well be better. It awaits to be seen if any additional personal training sessions can be provided as this is beneficial to her. When I took her to the gym Elizabeth was afraid to move from the edge of the studio and was not taking part properly in the exercises. I am hoping the personal trainer will encourage my daughter to go up the road on her own but she has not done this since coming home. She is more disabled now than previously because she was going out on her own places but it has only been six months and will take time to rebuild confidence. She will cling to your arm and is afraid of falling as she feels dizzy but I have seen some signs of improvement since she has come home. Being on Clozapine does not help as this is highly sedatory and Elizabeth has complained of feeling tired and lacking of energy.
Today we have met up with former “survivors” and later visited an old lady in hospital who we have known as a family for a long time.
Tomorrow meeting school friends who Elizabeth has known for a long time and we are gong to a craft fayre.