Draft In Progress

E-mail reaction is welcome .... and necessary ... !!!! mica2@tiscali.co.uk

tragedy

One recent review of old practice {Schizophrenia Bulletin 2009 2009;35(6):1057-1058 ] of the care outcome between day care and transitional [ immediately after discharge from inpatient care ] day centre features found that 1/3 to 1/2 were lost to contact at 6-12 months.

Gone away

a carer comments

1. If the patient is known to the Mental health Team and does not attend for an appointment, there should be a home visit to examine the circumstances.

2, If the patient is living at home, action could and should be taken by the relatives whatever the patient's wishes, and providing they have been given sufficient knowledge about signs of remission.

3. Is the patient able to administer their own medication? If not a regular visit and injections should be considered,

4. If the patient lives alone there should be someone, relative or volunteer to make a weekly visit.

5. If the [patient is behaving in a very strange way in the community, neighbours/friends should approach the Mental Health Team, possibly having been asked to do so in such circumstances and given a phone contact.

6. If patient tends to "wander"and/or go missing, the M.H.T. or Police should be informed.

7. It is hopeful that the patient and family will have good relationships and be given the information as to how to cope with the patient. this can be helped by group meetings attended by a member of the M.H.T.

8.A recognised I.T. forum can be of help.

9. No such patient should live in complete isolation, and this should be catered for in the Care Plan.

A prime concern is what to do about those with schizophrenia who have left home and gone out of touch,
unlikely to hold their own; more likely to not get hold of medication, often exposed to street drugs and 'street people' - more likely to relapse, and to behave badly, one way or another, the illness taking over and it's content misguiding them.

Here it's the family job: the family must persevere, thinking of some likely area where they might go, or thinking of someone whom they might contact: then ask to find somebody who may have some knowledge in the district where sufferer might be, and what is happening, who can be persuaded to keep an eye open and keep in touch with family.
Not to be able or asked to intervene directly. Often unwelcome from the family sufferer .

More usually to pass back information on how to contact the local services.
It must not be 'that they did not know'.

Family will be prepared to inform any local 'authority' appropriately, the local mental health teams, that they are available, best by writing a letter to them asking for it not to be revealed to sufferer - possible recrimination - and giving a copy. to your local Mental Health Trust relevant team, to keep them up-to-date, and involved.

Even the police in the area where where sufferer is, if you are concerend about safety, and certainly the Local Social Services, and by discovering the local Mental Health Trust, writing there too.

Write that they are to inform you of any proposed intervention so that you can be a part of that intervention in an appropriate capacity.

It is helpful to those in the uncomfortable position of having to apply coercion to a family member to have been in touch with family about what is going to have to be done currently, then afterwards.
That does not mean those with the authority to intervene can say they are doing whatever at your bidding, only that where intervention is required by events you are told in time for you to be part of it.
The intervention is not at your bidding. It is from the matter that has arisen.
Your presence as participant in some degree helps the intervenor and the family target.

Your intervention means that your family patient cannot be dealt with with as one unprotected ill person. Standards will be observed.
Those intervening can discuss with you their difficulties and anxieties and get you involvement, if it will be helpful

Still in the local service

At the heart of an area service is a census of all that the NHS in the area have on record as people affected by schizophrenia: held in a protected Area NHS website page, accessible in the NHS by password just to those who need to know, and checked by whoever is visiting the File to be registered as having done done so: what is listed is the whereabouts and the circumstances of those people affected by continuing schizophrenia; and how to resume contact with them in some way that will be there for any future change of behaviour or circumstance.

Within the list will be a clear marking of separation between those who have a level of sufficiency in personal care and a directed life - that is they are taken up with a programme of activities in the week that is a sustainable routine for them.

Then an assessment of the degree to which this is dependent upon support from others.
Consideration of the ability of the dependent upon reliably to carry on doing the contact and support, their ability to continue to observe what is going on with the illness, and how reliable will be the observation for noticing any change which makes for vulnerability.

Family should be prepared to be active and assertive themselves, without shyness or embarrassment, or leaving things alone, believing that all is well as the professional people have it in hand.
Stick your neck out so that the professional team know what you are prepared to do on behalf of your family sufferer.

Your family member deserves that.

If you feel left out of what is happening, feel that more needs to be done, are unable to get your point across, write to the local community team area consultant, copying to the Mental Health Trust Chief Executive with your facts; askthe Local Authority Socila Service to arrange for a carer assessment and register your concerns in that.

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What was there left for a carer to do ? Was there a carer Support worker Service in the area. A carer group meeting ? Other relatives to talk with ?

perhaps the St George's Trust [the Trust involved ] PALS would have been helpful

All else failing, I suggest put everything you want to say and have to say, in writing, to who ever might be concerned; mentioning that you are keeping copies.

In this case
1.
to the General practiitioner of the brother, asking to be heard in an appointment, pointing to the neglect and requesting a second opinion,
2.
copying the letter to the Consultant lead in the Community Team of which the visiting nurse is the community representative,
3.
copying the letter to the Chief Executive of the Mental Health Trust under whose authority the Care is being delivered.

Might asking for a Carer assessment have got his concerns put into writing.
Could he have called in the police, Section 135 Mental healt Act for example ... someone slowly dying by neglecting himself , being visited by a public service
- unlikely that the police would do anything
- the NHS Trust community team representative - with a team behind them
- which seems to have had the continual presence there to consider intervening, then deciding it could not and should not do so,

and Mr Coomeraswamy subsequently continuing in neglect.
Was his lack of will an indicaton of active illness, and therefore a different care and treatment plan to be turned to: or was there a 'religous decision' - Jain belief can do this but need approval .
Was an approved mental Health person [AMHP ] involved at all. They can be requested by the nearest relative to assess for Mental Health Acrt intervention.
Did some one, perhaps the Local Authority Social services welfare - put it to the mental health team that further action was down to them and they refused to
It may not have been anticipated nor discussed within the public service that he might die,
but that he would continue to deteriorate was clear.

The route for a carer to complain is to write to the chief Executive of the Trust concerned, copying the letter to the General Practitioner would push somebody else to think they have some responsibility to intervene.

More likely an appeal to Judicial Review against the negative decision - the Trust decision not to intervene.
Not likely that the brother would have access to information about that possibility, nor that he would know how to go about it ,
nor that he might have sufficent funding to go that way, or access to it. He could try a Charity - Rethink - Sane ! - but their response would not be a direct one but they would point out the routes to achieving something

If I ever successfully got a Scizophrenia Charity going, that would be one of the aims- to help with such access to legal and other support.

Could and should the brother have moved in.
If he could and wad allowed to
Would it have led to anyone with the authority intervening ?
He had after all tried before without success.

Who was doing the shopping for something to eat and drink ? Anybody ? Whoever was visiting did they look in the fridge - look out for food ?

Still it comes down to how do you make someone intervene ?
Who has the power to do so, but says they can't or won't ?

If he could have got the police to do anything their involvement might have woken up others. It would have been kicking up a stink - maybe asking the neighbours to do the same - and the landlord.

Just the fact of stirring the pot in any way possible, can be a resort.

Making a nuisance of your self everywhere you can - in writing as well as orally - in these circumstances. To the local MP, perhaps ?
Some 'serendipitous' connection might come up.

It all seems inadequate. There is a gap somewhere in the system of care.