๐ฅ๐ฒ๐พ๐๐ฒ๐๐ ๐ณ๐ผ๐ฟ ๐๐ฒ๐ฒ๐ฑ๐ฏ๐ฎ๐ฐ๐ธ ๐ผ๐ป ๐ฃ๐ฟ๐ผ๐ฝ๐ผ๐๐ฒ๐ฑ ๐ฃ๐ฒ๐๐ถ๐๐ถ๐ผ๐ป ๐๐ผ ๐ฅ๐ฒ๐ฐ๐ผ๐ด๐ป๐ถ๐๐ฒ ๐๐ฎ๐ฟ๐ฒ๐ฟ๐ ๐ฎ๐ป๐ฑ ๐๐ฎ๐ฟ๐ฒ๐ฑ-๐๐ผ๐ฟ ๐ฎ๐ ๐๐พ๐๐ฎ๐น ๐ฃ๐ฎ๐ฟ๐๐ป๐ฒ๐ฟ๐ ๐ถ๐ป ๐๐ฎ๐ฟ๐ฒ ๐ฎ๐ป๐ฑ ๐๐ ๐ฝ๐ฒ๐ฟ๐๐ ๐ฏ๐ ๐๐ ๐ฝ๐ฒ๐ฟ๐ถ๐ฒ๐ป๐ฐ๐ฒ
Hello
Below is the draft of a Petition which I intend to lodge in the Scottish Parliament this month, in the name of individual current/former carers and cared for.
Would you support it? Would you consider being a co-petitioner with me?
Do you have any feedback about it? Are there any further issues which ought to be included? Any other examples of NOT being treated as an Equal Partner in Care?
Would you be willing to make a written statement about your experience in support of this petition?
๐ฃ๐น๐ฒ๐ฎ๐๐ฒ ๐ฟ๐ฒ๐ฝ๐น๐ ๐ฏ๐ ๐บ๐ถ๐ฑ-๐ฑ๐ฎ๐ ๐ผ๐ป ๐ง๐๐ฒ๐๐ฑ๐ฎ๐ ๐ญ๐ฒ ๐๐ฝ๐ฟ๐ถ๐น. Let me know if you need extra time to reply.
Barry Gale
barrygale2003@yahoo.co.uk
Petition Title
Legal recognition of unpaid carers and those cared for as Equal Partners in Care and Experts by Experience
Calling on the Scottish Parliament to urge the Scottish Government toโฆ
legislate to ensure the right to recognition of carers and those they care for as Experts by Experience and Equal Partners in Care, alongside those with professional qualifications and experience, in all decisions which are made for or about them.
What action have you taken previously to resolve this issue?
I raised this issue in Questions to the Minister for Social Care, Mental Well-being & Sport at the Carers Parliament on 8 November 2023.
Background information
โWe recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carersโ expertise, knowledge and the quality of care they give.โ
(Foreword to Caring Together : The Carers Strategy for Scotland 2010-2015, Scottish Government, 26 July 2010 [1])
Why legislation is needed
Presently there is no right in law for carers, and those they care for, to be recognised as experts by experience and to participate on an equal basis with social and medical professionals in the provision of care and in the making of decisions about the provision of care.
There is no right to continue caring, if thatโs what the person cared for wants. Equal Partners in Care, which is an outcome of the above strategy, is merely a national framework and training tool [2] with no legal force.
2.http://www.knowledge.scot.nhs.uk/โฆ/core%20principles.pdf
Despite the acknowledgment of their expertise in national policy, family carers and patients are still sometimes marginalised by health and social care services. This happens in particular when there is conflict over what care or treatment is โnecessary,โ โrequiredโ or โappropriate.โ Even more so when the dispute is carried into courts and tribunals, where medical advice is deemed paramount.
For example, family carers have been :
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excluded from information-sharing about the person they care for because that person is deemed to lack capacity to consent and it would be a breach of patient confidentiality;
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for the same reason, allowed only restricted access to multi-disciplinary team meetings, after professionals have discussed sensitive issues and reached a consensus without them;
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refused visits, or have restrictions placed on visits, to a person in hospital because the patient is less manageable following those visits;
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excluded from decision-making about medical treatment for a patient, or about admission to or discharge from hospital, in some cases with fatal consequences.
In mental health tribunals, the bare opinions of medical and social work professionals are often โpreferredโ - because of their professional status and consequent โcredibility and reliabilityโ - over the factual knowledge of patients and carers about their own experience. A patientโs assessment of his own quality of life, and of the detrimental effects of medication, has been rejected because it conflicts with the views of those who prescribe medication [3], presumably because mental disorder makes one an unreliable witness.
In the Sheriff Court, carers appointed as Welfare Attorneys or Guardians have been prohibited from legitimate use of their powers, and even removed from office, simply because their decisions go against disputed medical advice, without any examination of the facts. Candidates for appointment have been ruled โnot suitableโ for the same reason.
Courts and tribunals expect patients and carers to obtain their own favourable medical opinion if they wish to challenge the views of the medical โexpertsโ who are their adversaries. In the case of appeals against detention in conditions of excessive security under the Mental Health Act 2003 (ss 264(7A) & 268(7A)) a favourable professional opinion is a statutory requirement. Such reports can be very expensive without legal aid, also time consuming and difficult to arrange, especially when the patient is already detained in hospital. Hospitals have restricted access by independent medical practitioners to the patient and to medical records. Few practitioners are willing to challenge the opinions of fellow professionals - they have nothing to gain by doing so, and reputation to lose.
What legislation should say
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In all situations in which the State has taken a person into care, or is providing compulsory care or treatment, the State must enable family carers to share in the provision of care, and to be involved as equal partners in the making of decisions about treatment and discharge. In all cases, discharge planning should begin immediately after admission.
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In any decision about care or treatment, the weight given to evidence should be based on relevant facts and experience, and not on professional status, qualifications or training. Any assessment of credibility should be based on the consistency of a personโs evidence, internally or in relation to established facts, and not on the consistency of that evidence with the opinions of professional parties or their witnesses.
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The extent to which a carer is able to provide appropriate care, and any risks posed in doing so, must be determined on the basis of facts and independent assessments and not on the professional opinion of an adversary. Assessments must involve the carer and cared for, and must be carried out in the proposed place of care wherever possible.
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The State must engage in โpositive risk takingโ โ testing the recommendations of the carer/cared for, and making adjustments after a failure โ rather than insisting on a risk assessment first or withdrawing the trial at the first hurdle.
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The State must provide reasonable support, up to the value of services which would be provided if the State intervened, to enable a carer to continue in the caring role, if that is the preference of the person cared for.
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The meaning of โmedical treatmentโ in s 329 of the 2003 Act โ as applied eg in ss 44 and 57 - should be clarified to state that it is treatment which can only be provided lawfully by or under the direction of a registered medical practitioner. Thus it excludes any care which could be provided lawfully by a family carer or by a social care provider.
(Whilst โmedical treatmentโ could not consist exclusively of such care, such care could be authorised if it is ancillary to the โmedical treatment.โ)
(The meaning of โmedical treatmentโ in the Adults with Incapacity Act 2000 should also be reviewed.)
- The meaning of โsuitableโ in relation to a candidate for appointment as Guardian or Intervener under the Adults with Incapacity Act 2000 should be clarified to state that it refers to the ability of the candidate to carry out the duties imposed by the appointment, rather than the willingness of the candidate to defer to medical advice.