Things are going really well. We are all getting on enormously. There are so many people helping me right now as I work full time but I am seeing more and more that Elizabeth is recovering since being at home and regaining confidence. When we did cookery together last weekend she showed she had not forgotten things and showed initiative. Elizabeth surprised friends of mine by automatically offering drinks and doing things to help. Having been institutionalised for so long, Elizabeth is making good progress and is being taken out more often too and is up later and no longer sleeps during the afternoon and that is good. She has also lost some weight.
Due to being in hospital for so long Elizabeth has lost confidence in going out as she was a virtual prisoner at the Bethlem and at Cambian where the entire family were concerned as she seemed to be declining so much. It is quite a job and virtually impossible to get someone off a section 3 from the private sector who keep people as long as 3 years so I heard. Even if it is clear that person is of no risk a Tribunal can be a lengthy process but I succeeded in overturning this and that is despite so many attempts at taxpayer’s expense to get rid of me as the Nearest Relative. Right now I am saving the public money – I am not asking for anything for my daughter and am even paying for her outings and support in some cases where needed. I have heard on the grapevine there is a meeting which does not include me but this is nothing new. Letters come through the letter box or are handed to my daughter in front of witnesses but they are addressed to my daughter, not me. I have appointed an advocate as mediator but no copies of these letters are coming to me. I have noticed that Elizabeth does not pick up the phone like she used to and I was noticing more and more that whilst away contact was becoming less and less and she admitted that the drug was highly sedatory and even say “I do not know if this is doing me any good Mum” but it was not just that drug the care home were giving but a string of other drugs in addition. If someone is deprived of the drugs for several days this particular drug Clozapine has to be very closely monitored and twice a day members of the Home Treatment Team come in – sometimes as late as 12.00 midday and then again at varying times from say 6.30 – 8.00 pm + It is restricting for my daughter as what can we do in the course of a day but on a positive note they have now brought the drug in line with what the previous psychiatrist raised it to (350mg). Of course this is the psychiatrist who is also a GP so I heard who called me a “nasty mother” and her actions meant that it was not only myself deprived of contact but it affected her sister too who was most upset – I had supervised phone calls at Cambian until they received a letter about human rights being abused.
Last weekend I took Elizabeth to a health spa – we had the most wonderful time but because it was Bank Holiday weekend could not get any treatments booked but I am hoping to do this this weekend. It is all about confidence building and not once have I had to use the extra drugs given freely at the care home ie Lorazepam. I have bought over the counter the rest of the drugs but Elizabeth is content being at home and not needed anything extra and has stopped smoking. It is far from being a stressful environment at home and she benefits from seeing a lot of people who have known her for many years and it is therapeutic to have her cat as well. The fact is that Elizabeth was stressed being away from the family as she was worried how everyone was and was panicking if anyone was ill etc.
In our local area, the local hospital has suffered to a great degree and has been downgraded with the Accident and Emergency Departments closed and services transferred elsewhere further afield. The maternity unit has been affected and yet in the mental health I noticed so many of the same faces. There would be more money to spend if the drugs were not pushed so much at MH patients as when I came into the building with Elizabeth trying to get an assessment re the Clozapine, I noticed nearly all the patients being familiar faces and still on the wards. Perhaps they too are “treatment resistant” and if there is no national metabolism programme it is no wonder things are not working properly. I am going to chase up this appointment with Professor Pirmohammed as my daughter is treatment resistant – however this could explain why there was no adverse reactions during the time she was deprived of the Clozapine by the team. It was not me depriving her as social services make out – I even offered to go down a pick the drugs up from Northampton however the drugs were declined by the manager of the care home who was worried he would get into trouble by giving them. Then the Pharmacist at the local hospital came out with a very familiar name to me that has been associated with much of my daughter’s past care – in fact the team have not changed much at all. Nearly all the same people are still involved – a team that has stuck together in the past.
On a more pleasant note I am having a quiet day in today and intend to catch up on chores within the house. I have sorted out the ironing for Elizabeth to do and we will probably go out shopping later and tidy up the house.
The Pros of being at Home:
Being surrounded by friends and family who have known her for years.
Familiar surroundings that she would know and has not lost her mind/memory. She could walk to the corner shop, to the local gym, to the bus stop. Everything is close by.
Being surrounded by friends and family means she gets taken out more often although what I would like to see is people of her own age involved. When someone ends up under the mental health all too often they lose friends and need to start all over again. This is not impossible and I believe in integration.
Being away from a hospital environment and in the home signifies a great deal and past problems were caused by the drugs and adverse reactions to them plus the environment where she was placed did not help.
I will leave you with a comment from a former social worker:
“She will feel more comfortable with her own kind”
I cannot disagree more – what is her “own kind!” Elizabeth is mixing in well with people not associated with MH disorders and besides those who do have so called labels I personally cannot see anything wrong with these people who are highly intelligent – in fact many are very caring an decent people -and I cannot think of anything more damaging to label someone up just to give them drugs and then be told you have to be on them for the rest of your life. When there are lots of labels you cannot help but question things and then when you read in the DSM 5 – there seems to be a label for everyone however the new label for Elizabeth is being conveniently ignored by the team despite the fact there is research to back this label and this is why I am not happy and I as the nearest relative have made sure that my daughter knows all about this wonderful report as she has every right to know. Getting back to these comments in bold – it is no wonder there is such a thing as stigma when a professional comes out with this! I totally disagree with this comment as if there was integration and involvement ie students such as trainee psychologists/psychiatrists for instance – if they were to be involved and come and even stay with the family. I almost feel like recruiting such staff myself through the local colleges so they can really learn as I am sure that judging by what I have come across at the Institute of Psychiatry they are not given the right books or receive the correct training. I certainly have a very nice collection of these together with top level advice and plus they would learn what is really damaging and that is the system controlling the care and services ie THE LAW when the law is not used properly- the bullying and barring of nearest relatives for a start and exclusion resulting in massive legal bills and the fact there is so much success in a small part of Finland is down to Open Dialogue so we are behind the times in the UK and taxpayer’s money is being wasted and A&Es shut down because the system has not been changed in years and it SHOULD BE. WHY SHOULD IT TAKE SO LONG TO CHANGE A SYSTEM THAT IS NOT WORKING.
There is stigma through lack of truth and education and the only way that things will ever improve is if there is inclusion, involvement, open dialogue and working with the families NOT AGAINST THE FAMILIES WHICH IS WHAT SOCIAL SERVICES DO.
Elizabeth was quite rightly upset at being in the position of having to choose between her Mum and her Dad and quite rightly she did not want to go back to the care home and I was not happy that there was such a high level of drugs in comparison to ever before on top of the 350mg Clozapine which in itself I have been told is too high. Then of course there is the issue of the missing £200 worth of possessions. At least nothing goes missing at home.
I am extremely happy she took that decision and everyone around me is happy too as we are all getting on very well and Elizabeth is doing OK. At least I as a mother care about her physical health. There is nothing to prove that I am neglecting Elizabeth and if there is concerns I would appreciate these concerns to be presented in an open and honest manner.
Now that the Home Treatment Team have come and gone Elizabeth and I can plan the day and I am looking forward to tomorrow already as I hope to go back and book some of those treatments we missed out on.
Whilst the nurse was here in the house, Elizabeth had been busy in the kitchen. She had made herself breakfast, fed the cat and I am not the kind of mother to do everything for her – it is only fair she does her own washing and ironing and she does not seem to need prompting for this. There is always someone here in the house but having seen her capabilities I would say confidently that Elizabeth could look after herself in the home. However confidence needs to be built up as regards going out, doing shopping alone and getting to and from appointments may be difficult for her because of the effects of the chemical Clozapine which is highly sedatory and this is why I am disappointed that they have just kept this at the same level seeing as Elizabeth was managing on nothing a while back. A low dose of Risperidone would have been better so I have heard.
For Elizabeth the past years have been an experience of intimidation and constant coercion by teams in the past under hospitals advising her what she should do and shouldn’t do and they can make someone feel embarrassed and awkward. What better solicitor to appoint through the team to replace one already in existence than one who never comes near her! How convenient for the team that she does not have contact with that mother who cares – however during the time that Elizabeth supposedly requested supervised calls at a time I could not phone she was texting me and I have proof.
If Elizabeth wanted to go back to the care home I would respect her wishes however I am sure they would slap on a Section even worse than a Section 3 the minute she was back there and raise the drugs. I have spoken to other mothers who have told me their sons/daughters are on sections that are greater than Section 3 and a prisoner for life. Many people become ill within the care system and disabled due to the overdrugging going on. All I am seeing now is progress and happiness all round and that makes me feel positive and happy. I am in touch with lots of mothers who suffer physical health problems as a result of being so upset at having their sons/daughters on virtual life imprisonment to the point of no return which shows the care is all about control- all this money wasted when A&Es and good services within the NHS are being shut down and of course the savings that would occur if things were done properly with the drug metabolism programme rather than push one drug after the other, several at a time at these poor patient and all at taxpayer’s expense leading to long term physical health problems.
I am looking forward to some forthcoming courses from very good professionals and there are some good professionals who want to see change and I am more than happy to use my example along with many others who would wish to be included as a reason why THERE NEEDS TO BE CHANGE IN THE SYSTEM AND THE LAW FOR THE BENEFIT OF THE WEAK AND VULNERABLE PATIENTS whereas the law protects professionals and allows them to use it to their advantage and this should never be allowed when it is detrimental to the patient and family.
Anyway Elizabeth needs to speak to the team telling them of her decision as she has told the entire family, friends and neighbours and there would not need to be any provisions that cost money.
I don’t rule out that Elizabeth in her current environment could not get back to a life of normality and move on in life and have a job, do something positive. If she is starting to do things on her own accord then with the right support anything is possible.