John’s Campaign and the NHS Constitution: carers’ rights and responsibilities must be enshrined too

The NHS Constitution has grand ambitions:

“For the first time in the history of the NHS, the constitution brings together in one place details of what staff, patients and the public can expect from the National Health Service. It also explains what you can do to help support the NHS, help it work effectively, and help ensure that its resources are used responsibly.”

The current document is here.

Interestingly, the NHS Constitution as currently drafted is focused on the patient, not the person.

Persons become patients or ‘users’ of health and care sector in specific episodes, say when ill with a chest infection, or requiring inpatient therapy for a mood disorder.

Andy Burnham MP, Shadow Secretary of State for Health, intends to implement “whole person care”, integrating health and care.

This joined approach also makes it possible for the NHS to become more geared towards health and wellbeing rather than disease and illness. One mechanism, for example, would be to replace an annual medical check up where neurologists simply compare repeat brain scans, with a more helpful ‘year of care’ assessment to guide a person with dementia how to live well.

There is no doubt amongst senior professional circles, as well as many persons with dementia and caregivers themselves, that people who know a person with dementia is part of that conversation.

“Unpaid caregivers” is a rather nebulous term, but covers a vast army of people, very often in the family, who care; without them, the system would implode.

And it is no secret that the next Government should want to elevate the status of paid carers too. It is too easy for there to be abuses of the national minimum wage and abuse of zero hour contracts in this sector.

Fundamentally, a professional, including a medical doctor, social care practitioner, specialist nursing specialist, psychiatrist, community psychiatric nurse, occupational therapist, physiotherapist, speech and language therapist, dietician, caregiver or carer, as well as the person with dementia himself or herself, can be involved in a personalised care plan.

This plan can set out what is to be expected for a person in the future, including advance care planning, and possible ambitions from a clinical nursing specialist for a proactive case management plan.

There is no doubt that some people need to go to hospital; and hospitals are not necessarily due to failure of medical intervention in the community.

But there is also growing unease that the hospital environment, despite the best will in the world, and considerable successful efforts into making some hospital environments ‘dementia friendly communities’, causes distress for some people living with dementia, particularly frail individuals.

This distress is clinically significant. It may be due in part due to the disorientation that people with dementia feel. It is known from the cognitive neuroscience of Alzheimer’s disease, most common form of dementia worldwide that attentional problems can be marked, even predating the short term learning and memory problems people traditionally focus on.

This means that people with early Alzheimer’s disease can be disproportionately ‘distractible’.

This mental distress can cause physical distress, to the point of the worsening of a physical condition. Clearly, many people are frustrated with the notion that hospitals can sometimes inadvertently worsen the physical and mental health of patients who are admitted to them.

Carers’ rights and responsibilities, currently noticeably absent from the NHS Constitution, therefore must be included in future forms of the NHS Constitution.

The “Triangle of Care”, involving the professional, carer and person with dementia, has already been proposed by the Carers Trust and the Royal College of Nursing.

Yesterday, the Guardian reported that:

“A campaign to allow friends and family open access to people with dementia while they are in hospital has seen a significant victory this weekend with backing from senior politicians. The Observer-backed campaign has won the support of health minister Norman Lamb, who has promised to write to all NHS trusts promoting the idea, while the shadow health secretary, Andy Burnham, has committed to strengthening the NHS constitution on the issue and including it in Labour’s election manifesto.

“I could have wept with gratitude and relief,” said novelist Nicci Gerrard, whose experiences with her father’s hospital care led her to launch John’s Campaign. It calls for the families and carers of people with dementia to be allowed to remain with them in hospital for as many hours of the day and night as necessary. The campaign has been deluged with support, not only from families but from doctors, nurses and charities working with people with dementia. Several NHS trusts have agreed to start implementing changes within their own hospitals and letting staff know what is expected of them.”

I welcome this cross-party consensus.

I am also pleased that Prof Alistair Burns, the England clinical lead for dementia, is also prioritising this.

Apparently on Wednesday 11th March 2015,, which is #NHSChangeDay – a chance for positive changes at grassroots level to be highlighted more widely – NHS England is organising what it is calling a “Thunderclap” on behalf of John’s Campaign (@JohnCampaign), across thousands of social media accounts, including Twitter and Facebook, at 11am. Please do support this, as well as the remarkable Andy Tysoe (@DementiaBoy) for #DementiaDo.

Concidentally, also on 11th March 2015, but at 11.45 pm, the consultation into the current NHS Constitution ends. Do take part in that too! Details are here.