" Our lives begin to end when we remain silent about things that matter "

... Dr Martin Luther King

M ental I llness Concerns All carers

A Carer speaks from experience

I think Expressing .Emotion (EE) . should be explained to the carer/s. A great deal will depend on the character of the carer.
If the carer has a "short fuse" they will find it more difficult to be uncritical and patient than someone with a placid nature.
This may therefore echo in the Care Plan, and some may need more time apart, than others.

We have never been a high E..E. family. I suppose this has helped.
When X. was first admitted to hospital (Many years ago with less good treatment) I saw a crocodile of patients being taken for walks. and I said to myself "THAT is NEVER going to happen to X."

My first reaction to his admission to hospital was grief. and for about 8 weeks I cried. Not in the ususal sense, but tears just ran down my face continuously.

Then one day I woke and said this is no good to him or to me.
From then on I took a positive attitude and have tried to learn all I could about something that is in a way unlearnable,
because it affects every patient and carer in a different way.

Community Care:- ... This has worked well for X. and myself and family, but a great deal depends on the social circumstnaces,
and better information about both the illness, and the Benefits system, especially for new patients.
Having been myself a nurse has been a great help to me, but many do not have any such background, many carers are unable to get face to face information.
Many families are unable to cope, especially (I think) if there are younger children.
S. now has the knowledge and sense to ask for help when needed, which isn't often, but we talk, and I have been able to explain his condition to him.

There are now so many elderly who need care themselves and they seem to take priority over the younger people with severe enduring M.I.
As you are aware the patient often does not accept their illness.
The change in morals and break-up of family life has not helped, nd puts a great strain on parents,
especially if there are younger children.

The question of work depends on the indiidual patient, and the provision of sheltered workshops suggested by Rethink is rather late as many have closed.

Although the Government is talking about better allowance for carers, I hear today on radio that it is not for another 3 years - far too late for many and a disgrace that it was not put in place before the closure of hospitals.

Housing - I may have mentioned that there are flats for sale as sheltered housing here, but I believe that the cost is 250,000 - ridiculous.

S. does voluntary work for me and his brother and Su.
He is only supposed to work 16 hours p.w. but works harder at odd jobs, gardening, and his own creative work than many who are at work.
Will the new regulations have any ffect on this?
He is reasonably happy I think.
Has regained his sense of humour, but his underlying condition shows through occasionally when he is tired.

His weight gain on Olanzapine is minimal, and he takes Kemadrine still as he feels he need for it.

A number of patients I have contacted on line have complained of great tiredness. Some have been working, others not.
I have noticed that X can be very active, but then "crashes" and sleeps.
This is often following signs that his mental processing has reached "fragile".
My suggestion that he then stops "work" and has a rest, is usually met well, and he either lies on his bed or sleeps in an arm chair.
He wakes refreshed.
I think this is a great factor when insisting that patients with schizophrenia should work,
as in industry it would cause disruption, and probably embarrassment to the patient
who often does not wish that it be known that he//she suffers from mental illness.

Pentreath Industries - nationally recognised - was a pretty ideal setup. How and why did it die

Unfortunately money is the purpose of industry. If a firm were large enough they could - as it once did - support a small group especially for disabled people, just as this was done for pupils in the school where I worked.
Self employment again brings the pressure of some days being unable to work, and lose Personal finance, .
In passing, X. sometimes talks "goon talk" so I join in with him and we are able to laugh, and in some way it gives him relief.

With regard to the inspection of Care homes, Prisons and Hosptals. I am sure there are many individual homes where inspection is needed.
If the patient is included in the care of the Mental Health Team in the community this will be covered, provided they do visit and discuss, and they give feedback about any problems or difficulties either in housing or family relationships.
If the patient is not on Care .Programme .Approach. as they are coping well, intervention for problems may be missed and lead to some of the tragedies wich have in the past occurred.

If the family carers are included in the TEAM and make good rellationships with the professionals this could be overcome. (I think)

With regard to street drugs including cannabis, it should (I think) be recorded in the Care plan, that friends, relatives and other carers use such drugs. Young people usually follow their adult model habits.

" Interesting conversation with patient. He can concentrate well in one-to-one conversations,
but finds difficulties when several people are talking together, and says his brain will not cope with this.
This may well have an effect on patients who are "pushed" into employment.
It is also an indication of the reason for a patient's withdrawal. They should be allowed to seek solitariness for short periods.
[ They need time to work out a context - go back to find the starting and the holding context, and catch up ] "

Our journey has been similar to your description. However X. and I have a close and friendly relationshiip, and this helps.
If as a child the patient has been awkward, or the family dysfunctional, it must be more difficult.

Also in broken families where one is left as carer. The Government seem to think that everyone should be out at work.
This is difficult for carers particularly on low income, and not conversant with the Benefits system.

X. wrote me a letter from college which was totally Gobbldegook, and I took this to the GP. who referred him immediately to MH treatment.
On one occasion he was discharged home and was obviously unfit, and threatened me first, so I went to his father on whom he made a violent attack on his disabled father who was fortunately in the garden shed.
His Dad brought him to earth by squeezing some vital parts, whilst I phoned the hospital and they told me to phone the police who were absolutely marvellous.
By the time they came his father's actions had brought X back to"normal" .
The Nurses came and fetched him back to hospital.
I forget whether he was on section at the time or not. It's a long time ago, and I think it was when a locum psychiatrist was there.
I went to see him in the office and said that I had just had a long conversation with X. and he told me he was coming home, I was going to buy him a sports car, and he was going to Cambridge to study entomology!.
I returned to see the locum and he changed his mind about discharge!.

Comments on Rethinks return to work. Page 1. Pros and cons of delcaring mental illness. The information seems rather contradictory.
No declaration of mental illness may lead to extra appeals at high cost.
No declaration may lead to difficulties in medical visits, or discrimination if the patient
is not up to the job, or workmates do not understand.

Page 2. Voluntary work. Who pays the expenses?
Page 3. Get advice on how Benefits are affected .
If Doctors do not understand how mental illness affects the patient they should not be appointed to examine those with severe and enduring mental illness. Ban on working for relatives does not include brothers! If you have been doing voluntary work for years do you have to declare this to the DWP?

Sheltered workshops most have closed.

I think a backward step should be taken to places like Pentreath Industries, where the Admin. staff are aware of and understand schizophrenia.
At pentreath the patients got on well together, and in some way understood one anothers mental needs.
In "open employment" this is unlikely in many cases. Most firms are there to make money!

(The root of all evil) It might be that larger firms could emanate Cadbury's and build their own little townships.
This would also help with transport problems which are bugging all the community at present,
But this would not be suitable for all.

No mention is made about the fluctuating state of schizophrenia and bi-polar. Mood illnesses. This is an important point if people are to try to work, as employers are there to make money, and frequent absences may well affect their efficiency and their worth to employers.
Refusal to claim Benefits. How does this affect continuing Power .of Attorney .which has been in place for a long time? Is any action required?
Phasing in of new arrangements. How much is the cost to Government ? does it mean just more civil servants and paperwork?
The new arrangements appear to be as complicated as the old ones, and are likely to cause a great deal of anxiety to patients, especially long-term patients who have been unable to work for years.
Appeal within a month. Some patients do not keep to this schedule through the effect of their illness.
Some arrangement for assistance for which they will not ask as they are often anti-psychiatry
even though receiving treatment.

Some good ideas but many are unrealistic for those with severe and enduring mental illness. Again the physically disabled can cope better with paperwork. It may help them.

Useful inoformation re: medical certificate changes.

Agree with training programmes, but would include paramedics.. Ptients looking after themselves. Not all patients are able, and these must be cared for.
No mention is made of the number in prison, or the lack of treatment available to them. they should not be there in the first place!
This brings the question of numbers of beds and trained staff needed.
Support at work. Small firms in particular are struggling and unemployment rising,
Thus having someone who knows about schizophrenia on the staff is at present impracticable.
Improveent of life for patients. Better and simpler Benefits which would enable them to buy materials for use at home.(For some)
More information to families as to whether they are willing or able to be carers. (This is on the statutes)
Recognition, and perhaps research into the future numbers of mentally ill people. It has been forecast that Autism is increasing in the young.

With regard to the assessment of patients with severe and enduring mental health problems who are cared for in the community.

Are the carers/relatives to be taken into consideration reagarding the patient for whom they care, and who have the nearest and most continuous contact with the patient?
With regard to the assessment of patients with severe and enduring mental health problems who are cared for in the community.
Are the carers/relatives to be taken into consideration reagarding the patient for whom they care, and who have the nearest and most continuous contact with the patient?
The Paper regarding assessment and training of assessors makes no mention of informal carers who may often be the best informed regarding the patient's condition. I can understand them not being made assessor as some may have financial or personal interest in the outcome of the assessment.
However I DO consider that their comments are accepted, recorded and attended to.
There have been too many tragedies arising from lack of attention to informal carers.

The Paper regarding assessment and training of assessors makes no mention of informal carers who may often be the best informed regarding the patient's condition.
I can understand them not being made assessor as some may have financial or personal interest in the outcome of the assessment.
However I DO consider that their comments are accepted, recorded and attended to.
There have been too many tragedies arising from lack of attention to informal carers.

The questionaire appears to favour cities, when the needs in the rural areas may in some things be the same, but others different.

e.g. problems of transport.
problems of less employment opportunity.
problems of housing. (Pretty universal)
More likelyhood of isolation.
More difficulty in getting to shops.
Increased cost of professionals visiting.
Less possibility of joining groups of interest.

Memory impairment worse when outside contact becomes too much, therefore retirement to quiet and rest at frequent but varying intervals appears to be needed.

I think it depends a great deal on the state of the patient's mental health - crisis yes, it is imperative although from comments I have heard the hospital settings, particularly in the cities is pretty awful. Prison definitely not.

This shows lack of Community Care including that of the professionals.

I think that prior annd repeated informal consultation with the patient should be made. I feel I rather sprang our change on X. [ moving house and county ]without enough definite warning, although I had been trying for about three years to persuade him that we could no longer continue at Tr .....a.

It was too big a change and not in good enough condition for me to cope.

Fortunately elder brother stepped in and that helped a lot.

It was also any break-up - loss of contact - with Su. [ed:- long term - from previous - in- patient friendship -platonic ]that worried him.
Although he grumbles alot to me about her difficult behaviour.
However he has his own en suite here to which he occasionally brings X.
And because of rules and regulations he comes each week for his 35 hours.
So much depends on the weather at both places.
If he can get into the garden he is fine, either end. there is a shed here as well as the other end where he can do any woodwork, but he is at the moment a bit "iffy" about what to do next.
At my suggestion he has brought his painting equipment here so that he has something to do if it is wet (When isn't it?!)

With regard to any other patients, I think any changes must be taken on an individual basis.
One of my contacts down here has a grand daughter who tried suicide, but is now in a flat of her own.

It worries the family that they can get no information about her condition, but according to Gran she is managing fairly well. I don't know her diagnosis, but it sounds like sch. and she has upset her sister by her behaviour whose friends no longer visit. She lives an isolated life, but now has a kitten and a puppy.
She weill not give her parents or sister any information about her condition.

The parents visit from time to time unanounced, but she keeps the flat immaculate. I am unsure about medication or visits from the MHT. Another Gran has passed a lot of info on to her daughter whose son has sch, but also was on cannabis.
That now seems to have been sorted out, and he too has a flat of his own, and according to gran is much better, having injections, and helping out at a garage

. It is very difficult to let go when you understand their vulnerability.
I consider I am fortunate that X. keeps in contact with me almost every night by phone, and we have long conversations, and of course see each other every week.
He has taken up cooking, and assures me that he eats O.K.
I need to remind him about ordering his medication, but he does take it. His weight seems fairly stable

I still haven't done my response to"A New Vision for Mental health" as it's not due till november.

It disturbs me that some of the patients who write on the Rethink Discussion Forum are so critical of the psychiatrists and nurses. But it may be that they are not in proper recovery and have little knowledge of what is the matter with them.

Life is so different since our youth - it seems that everything goes , with little disciplinefor the youngsters leading to no respect for anything. And the World situation doesn't do much to cheer anyone up. We can but do our best.

It has not been mentioned that telephone communication is helpful. X. says that his mobile phne is the best present we ever gave him.

A case (one of the goons) some time ago told of the patiet phoning his wife (in the same house) for his requiements, such as a meal.

I think the mobile phone is a great help to prevent E.E. and also gives a sense of security to the patient in having cotact with their carer.

Re admission sof S. !st was voluntary. following your visit requested by G.P.

2nd (I think) because his step sister and husband had refused him entrance and he refused medication.

3rd. From college when he phoned me to say it was weekend and he had run out of medication. He was then admitted to Glangwilly Hospital Carnaervon - re-medicated and for 2-3 weeks stayed as a patient but went to college from there daily, returning at night.(Not sectioned)

4th. Some disturbance at college with a girl who had been trailing him and he didn't want to know.
This time he was sectioned and Bernard and I went and brought him back to St.Lawrences which was negotiated via the Psychiatrist at St.David's Hospital Carnaervon, and st. Lawrences.(That is a story in itself)

5th. The occasion I spoke of in my previous comments. The treatment was unconventional and not to be recommended to Professionals! It was probably under Section as I think L.. S...... was there, or that may be a following time..

Then he was treated at home by weekly visiting nurses, and I undertook rehab with painting and photography.

His Dad was now an amputee (arteriosclerosis} We used to go out for car runs and X. took his camera, and then used a small dark room at home for which we had a grant lf 60 for conversion. This was given via the resident Social Worker who was very good, and I can't remember his name. He left shortly after.
My elderly Aunt was also with us at that time, but the G.P. arranged for her to go to a good care Home in Launceston as she was disturbing Bernard and upsetting X.

I visited a National Schizophrenia Fellowship lecture in Leicester given by the late Nicholas Lines, and his lecture made me "click" as to how the illness affected X. and how I coud best treat him. Have asked if there is a copy of his lecture available but received no reply. Early on I also attended a meeting up country somewhere with Prof. Wing. who told us that little was at that time known about Schizophrenia.

Progress. Hasn't been able to read a book for years.
Said he couldn't remember the top of the page by the time he got to the bottom.
But has now read a book and enjoyed it and bought some more - Robinson Crusoe, Jekyl and Hyde, & Huckleberry Finn.
I am very pleased.

was always good at school coming in the top three of marks for all subjects except maths.
I spent a lot of time trying to help him with his times tables, without success.
His marks in maths were always low, and in Higher school cert. he got 2%. Is there as far as you are aware about, a mental block with figures
He still finds money pretty impossible to manage


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