It is Elizabeth’s Birthday tomorrow but I will not be seeing her. She will be spending yet another Birthday in hospital but she is miles away from home and no one in the family is going down. I think other family members will go next week but I am hoping that when the weather gets a bit nicer to spend more than just the usual day or two but by this time Elizabeth may be somewhere else – I do not know where. Anyway I have sent a parcel of things for Elizabeth which I hope she will get in time for her Birthday tomorrow but today when I telephoned there was no answer. I have not spoken to Elizabeth for some time and wanted her to know I had sent something so I had to go through the office and patient’s phone and it turns out that Elizabeth’s phone charger has gone missing. I then telephoned the Manager and asked if someone could help her find the charger as it could upset the rest of the family if they also could not get through. It is costly to hang on and wait on the phone for a long time whilst staff go looking for Elizabeth so hopefully this will be sorted out. There is a new consultant psychiatrist I think but he or she has not introduced themselves to me yet and it is impossible to go down for every meeting but then I have never in the past been included in any case.
I went into a very nice store today on my way home from work called Hotel Chocolate. They always give out free samples and I am supposed to be on a diet but I suppose one wont hurt however I was tempted not only to buy something for Elizabeth today but also something for myself too. I am hoping the rest of the family can bring this down when they visit shortly.
When I think about it I do not know how on earth I would be able to see Elizabeth if I did not have a car and did not have a job. There is no help whatsoever financially and if a mother or family have no means to go and visit it must be very hard for the patient because not all patients have terrible relationships with their parents. If I go down and visit it is too far just to go for 1 day and I have to book in somewhere and this is costly. There is no help and there is no advocacy and I tried so hard to find advocacy for myself but because I do not live in the area the advocates could not take on my case and local carers groups could not help me. I do not think the advocacy is fair for my daughter either as not one person as far as I know has shown her a report stating a different diagnosis. I am not happy with this at all and I as the Nearest Relative have had to read this report and the other one I have and this should have come from her advocates/solicitor as far as I am concerned. I am far from happy and do not feel my daughter is being represented fairly.
Anyway I must ring up social services tomorrow – it is difficult to get hold of them sometimes and I want some answers to my questions raised last week about the placements.
I have sent some money and hope that the team will buy another charger if this cannot be found and that they take Elizabeth to the shops so she can buy a nice cake for everyone.
Whilst on a local ward I went to Nandos and bought food for everyone to take on the local ward.
The food is supposed to be much nicer on the private sector ward and in my opinon more needs to be done about the food and this is why I want Dr Walsh involved and Elizabeth has agreed to this. The correct diet and nutrition is vital and I have been recommended some tests to be done with Dr Shaw as well. It is all the more important that with all these drugs my daughter has the correct diet and if she is on Metformine for instance this especially needs to be looked at in depth and I want to know why these tests that I have paid for costing hundreds of pounds are not available to those who do not respond to the drugs. Well I am prepared to pay hundreds of pounds more for even more tests to be done however unless such tests are done the treatment may be very wrong and could affect someone’s health. This is why a specialised assessment centre focusing on nutrition and involving leading experts in the Country should be set up as in my daughter’s case a close watch needs to be given to her physical health which I as a mother feel is being totally ignored.
It is wrong to continue with a treatment when it does not work and when harm is showing as per the private test results I have had done.
Why is there no centre in the UK when in the States there are several Alternative Care Centres? Whilst there are therapeutic communities there needs to be something even more specialised as if someone is receiving the wrong treatment that could be harmful to them like my daughter on contra indicated drugs then they will become a burden to the NHS if something is not done. There could be underlying health problems and there are no proper tests or assessments given under the NHS. I have had to pay privately for these tests which prove my point. What I do not like is the way these reports are being ignored by the professionals and this is totally wrong.