Schizophrenia

[Annieosb]

Hi,

Im new here. Have an adult son with Schizophrenia, finding that after 20 years, he is still treated with such disrespect by the so called caring NHS.

What can I do to protect him when I,m gone. My family have deserted us and I am a widow. He is an only child.

Thanks

[Stilltrying_]

If you have any money could you set up some sort of trust fund and also maybe look into a way that his care can be provided for; eg visit residential settings and seeing if anywhere would be suitable?

I am so sorry for your situation. I know what you mean about the NHS; it does't exactly afford dignity to people sadly affected by a mental illness. Sorry I can't be of more help but I did want you to know that I've read your post and hopefully others may chime in with some advice and support for you too. Gemma xxx

[Annieosb in reply to Stilltrying_]

Thank you Gemma but do not have money to speak of and after 20 years of fighting his corner (and getting old with chronic illness) I am exhausted and low.

Thank you for taking the time to respond,

[Stilltrying_ in reply to Annieosb]

Hi there, I really sympathise and I know exactly what you mean. Mental health seems to have such a low priority and caring for someone with a serious mental illness is very waring and involves many mixed emotions I am sure. You sound like you have taken care of your son so all to your credit as i know it isn't easy. I worked as a support worker in mental health and I remember one mother in particular with a severely shizophrenic son who put her all into keeping him decent, clean, shaved, suitably nourished and occupied to the level to which he was able. She received so little support herself and had virtually given up her life for the sake of her son. I found great dignity in their situation and I am getting the same sort of feeling from yourself. It sounds like you have worked hard to create dignity and decency in your son's life and it is waring and a big worry for the future I know. Sending genuinely warm vibes, but alas I don't have enough experience to offer much more than that; except to say be proud of yourself and what you have achieved with your son. There is great dignity in these acts you do for him.

At the moment my dad is very elderly. He keeps falling. I make sure he has nice new and decent pyjamas, underpants, warmth in the house, appropriate aids, appropriate food and some company etc. Have you tried social services at all? I'm sorry I am not sure of anyone else to suggest and I know that mental health provision is very bad.

It sounds like you may be suffering from depression and exhaustion yourself. Some places offer respite for carers but again my only knowledge is that the GP and a team from there may be able to assist if you plead your case to them. It sounds like you deserve a break and a bit more help than what you are getting.

Gemma xxxx

[Annieosb in reply to Stilltrying_]

Thank you so much for your kind and understanding email. All of the charities and mental health services seem to talk the talk but not walk the walk. Mind, Sane etc seem to be helpful but with all the monies that are donated and monies paid to the NHS seem to make no difference at all. There is no protection for seriously mentally ill, Gay people have rights by law, black people have rights by law, but not our poor loved ones.

Norfolk MH services have been in special measures twice, are not deemed inadequate by the CQC. Yet I was informed that there is 17 layers of management.....why do we need that, what do these people manage? And hell knows what the wages bill is!! Being an ex NHS employee I have see the blatant nepotism, wastage and as for whistleblowing....prepare to lose your job if you go against the senior managers!

We need more foot soldiers on the ground to help our mentally ill (and older vulnerable people).

There is no day centres any more, or therapeutic communities and these poor people are left in private care/rehabilitation hostels, and at first hand experience they do nothing. Walk the streets, take alcohol and drugs and are generally abused as they are vulnerable people.

CQC will do nothing as they are not physically caring for these poor souls......................sorry I could rant forever.

What we need is for UK carers to petition parliament to really do something.

At the end of the day everything revolves around money.

God help us all with mentally ill loved ones and elderly relatives too. What happens to them when they don't have us to fight their corner.........homelessness and cardboard boxes i suspect.

Annie x

[Stilltrying_ in reply to Annieosb]

Keep on fighting the good fight for your son and for others. We all play a part and can do good in our own small ways against all these difficulties which I agree are there and sympathise with you.

I suspect you are pretty drained and some TLC your way would also do some good. Could you get yourself an aromatherapy massage or get your hair done or something like that if you ever get a free hour or two? Maybe pass the care onto someone else for that time to give yourself some pampering. We all need it xx

[MAS_Nurse]

Hello Annieosb

Thank you for your message . Welcome to this group.

I am sorry that you are having such a difficult time with your experience in the NHS. Perhaps you could tell us more about what is happening? The Patient advocacy service PALS may be able to offer more help with his situation.

Have you discussed your concerns with your son’s doctor?

Our members are very supportive as you can see.

The charity MIND at mind.org helpline

0300 123 3393 May offer more advice.

The topics and pinned posts may also be helpful.

Do keep in touch

Best wishes

[Annieosb in reply to MAS_Nurse]

Thanks for the response.

You sound so positive about the PALS et al.

After 20 years of everything I can possibly think of to aid my son,I am at a loss. Carers become more experienced that the professionals (no disrespect intended)at the needs of our loved ones, yet who listens to us....so much for tiangle of care and all the other buzz phrases....most recent one is scaffolding!! I am an RMN and spent 12 years as the PA to a medical director, not much I don't know about the system.

Norfolk has the worst record in Britain for mental health and recently (again) was told, by the CQC, that the service is inadequate.

God help us all, Sufferers and Carers!!