Carer charities on 'breaks' - but why not be assertive and claim breaks within the week
August 1
burden of care extracted; " Fifty-seven per cent of carers of service users with psychosis
living within an inner city have regular contact with their relative, and
33 per cent of carers actually live in the same household (Garety and
Rigg, 2001).
Unless the amount of care provided by statutory services
increases substantially, it is likely that there will be greater pressure for
support to be provided by carers (Maher and Green, 2003
This
pressure is increased by the growing incidence of psychosis within
inner cities. The reported incidence has doubled since 1970 with rates
of 40 per 100,000 (Boydell et al., 2003).
The effects on carer burden with a relative affected by psychosis
have been reviewed extensively since mental health services have
become more community focused.
Such burden frequently results in psychosocial distress, reduced quality of life, and significant impacts on the health and functioning of the carers
was found that service users living with relatives who
displayed high levels of criticism, hostility or over-involvement relapsed
more than service users whose families were less expressive of
their emotions.
These behaviours were named ‘High Expressed
Emotion’ (High EE) (Brown et al., 1972). Expressed emotion does
not tell us much about the causes of schizophrenia, but it can be a
predictor of its course when someone with the illness lives with
relatives
The reduction in families’ ambient and chronic stress levels and a reduction of face-to-face contact to fewer than thirty-five hours per week can enable the service user to cope better with unavoidable stressors and reduces their risk of relapse (Falloon et al., 1984).
[ ED:- that's why breaks within the week are the Care Programme Approach treatment Care Planneed at the onset of the illness.
To be continually recorded in any Carer Assessment when that need is UNMET.!! ]
Quoted in the EU subcommittee report debated in the House of Lords october 2007 .
.. A few years ago, a study funded by the Commission looked at the families of people with schizophrenia in five European cities.
[Lorenza Magliano et al 1998 ..Burden on the families of patients with schizophreniaJournal of Social Psychiatry and Psychiatric Epidemiology
It found that the principal family carer spent on average between 6 and 9 hours per day supporting their relative with schizophrenia.
The "impacts" most commonly reported by family members were restrictions on on social activities, disruption to family life, and feelings of loss - lost hope, lost years, lost companionship.Is this not a breach of Convention on Human Rights: - Article 8 ... a right to privacy and family life ...
You should have entered " regular breaks within the week" as your NEED in your CARER ASSESSMENT part in the first CARE PLAN, at the first contact by 'cared for' with Mental Health Trust Team. Your CARER ASSESSMENT then would have been part of the CORE ASSESSMENT before the CARE PLAN .
'First Timers' should do this - now.
What to do now ? The weapon - the instrument at the disposal of the carer - the mechanism - is still the CARER ASSESSMENT.
You can ask for a CARER ASSESSMENT and get one, each year !!If you are expected to continue to be able to deliver caring for someone with a serious and enduring mental illness, you have a right to claim your own family life ... then regular "breaks from caring" during the week, are entered by you as the main statement of Need request in your CARER ASSESSMENT - by your 'cared for or cared about' going out to do something that will engage interest for them - . If 'they 'do not meet your request, the delivering Mental HealthTrust NHS has a Service Deficiency, and the Form indicating that - there is one - goes to the Primary Care Trust , to accept the requirement, and meet it.
If not delivered, write to the team Consultant , Mental Health Trust Chief Executive and state it to be an unmet NEED and therefore a SERVICE DEFICIENCYYou help others in doing this
{ .... Community Treatment Order if it comes to that
CTO - aren't they careful it can't be applied in a family home. But this wrong according to 'Talking mental health' law .....[ " Community Treatment Order
A Community Treatment Order is used
when the people looking after you think you need care and treatment over a long period,
your judgement is impaired by your illness,
you would be at risk without the treatment
and you do not agree.A Responsible Medical Officer (RMO) and a Mental Health Officer (MHO) will have agreed that you need this and they apply to the Tribunal for the Order.
You have to receive care and treatment either at home or somewhere in the community." ]
It can come as a relief for some to have that decision made - if they have the authority from qualification and experience - this shows they are ready to use that experience in sufferer's best interests, that they know what they are doing and it is being done publicly and clearly .
If all carers of and about those suffering from schizophrenia used their CARER ASSESSMENT , in numbers, then quoting those numbers, would bring power to the position of caring. in the Trust area. And nationally.
I am genuinely upset about this - it seems to me a simple thing to do.
You demand real sharing of care.
To deliver breaks 'within the week' regularly to you, the service has to provide lead in for somewhere for the cared for to go on a regular basis that is certain, and you are assured about, which means provision of somewhere something that they will want to do, which will give them the kind of supporting structure of a routine in place, of the sort ordinarily, that comes with work and domestic repetition, which they cannot achieve themselves, because their condition carries reduced working memory capacity - part of their continuing illness that needs care and treatment - requires help !!!, for goodness sake ! <When this missing element is registered as an unmet need - a service deficiency - taken to judicial review by someone or some charity that can afford it - a footballer with a family sufferer ??? - Bill Gates ..... then when this need is established, Mental Health Trust and Local Authority aftercare leads, everywhere will have to provide proper rehabilitation opportunities for those in residual schizophrenia, and commissioning authorities will have to release the budget.
ONE successful challenge and every family benefits as does the whole service .
Some sufferers will still be on income support that will get them legal aid, some will have given their family some kind of power of attorney that they can act for them, to appeal for their Human Right.
Article 8 .the right to privacy and family life