How can we tell whether #NHSChangeDay “works” for dementia?

A number of different jurisdictions do a form of “Change Day” for healthcare. The NHS Change Day will take place this year on Wednesday 11th March 2015.

This year, Andy Tysoe will be spearheading efforts for a ‘change’ in how the general public perceive dementia – please do support @DementiaBoy and #DementiaDo.

How you measure outcomes as well as short term benefits for NHS Change Day is to be itself an outcome of a study shortly. But I do find interesting the basic issue of how social movements are deemed to have had any effect or not.

I took as a useful starting point this document.

This is a graduate thesis from 2008 entitled, “Arenas of social movement outcomes: accounting for political, cultural, and social outcomes of three land-use social movements” by Brandon C. Hofstedt at Iowa State University.

The actual number of pledges in itself is clearly not the factor. “Targets” have been pervasive in English dementia policy wherever you look, such as the number of people enrolled into research studies, or the number of new diagnoses of dementia. But, coupled with the fact that shrewd people can effectively ‘game’ such metrics, together with the more underlying issue that quantity does not necessarily equate to policy, the number of pledges about dementia is not THE measure.

Last year, there was a very successful ‘Whose Shoes’ campaign with Ken Howard, living with dementia, which explained what it was like to receive a diagnosis of dementia, and what it was like to live with that diagnosis. But was that in itself a game changer? The initiative certainly did open many people’s eyes, and it was extremely well received; but did it change everyday practice in the NHS?

It is well known that the disclosure of dementia in the NHS can be extremely poorly done. One aspect is the rushed nature of the appointment for that disclosure, as well as the lack of supporting follow-up. But, as Chris Roberts, living with a mixed vascular dementia and Alzheimer’s disease, remarks, a more systematic imparting of the diagnosis, perhaps divided up into pre-disclosure, disclosure, post-disclosure parts might be more helpful. This is, in fact, the structure adopted for the disclosure of a diagnosis of Huntington’s disease.

The diagram below is taken from the thesis above.

Diagram

We know that social movements all have lifespans of their own, and it can take a long time after the existence of a social movement for the effects of that social movement to become known.

But even in the lifetime of the recent NHS Change Day campaigns on dementia it is worth examining whether there has been a fundamental change in dynamics in political, social, or cultural domains.

In terms of global policy, this month the Alzheimer’s Disease International and World Health Organization, consistent with previous policy strands from the G7dementia and World Dementia Council, will be fleshing out the key tranches in policy, which are in prevention and the search for a cure. In fact, policy, including social care, for people living well with dementia currently has not been given as high a priority, it can be argued. Despite devastating social care cuts in England, the Prime Minister recently boasted of how England should be known as “the best place to receive a dementia diagnosis”.

Social capital is essentially about looking at the power of individuals relate to each other, and cultural domains reinforces this notion, looking at what ‘cultural norms’ are. “Dementia Friends” has so far cost a few millions, but some believe it is money well spent for offering the general public basic information awareness of what the dementias are. Such information, it is argued, is that the first step to breaking down stigma and discrimination.

But no initiative on its own, even with the backing of ‘Dementia Friends’, can be expected to be wholly transformative in changing cultural ideas around.

That is where, perhaps, the particular strength of Andy Tysoe’s present campaign lies for NHS Change Day. The idea is that by gathering lots of ‘backers’ to his pledge, Andy can bring about a social movement encouraging people to think differently about dementia; and lots of pledges can make NHS Change Day a powerful force.

This indeed is formidable, but we should all be concerned if nothing fundamentally changes. There is only one person living well with dementia on the World Dementia Council, not even democratically elected on the World Dementia Council despite all the campaigning; and, there still remains the 30 minute rushed consultation in busy outpatients to explain the life changing diagnosis of dementia.

And you know the rest.

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.

 

NHS Constitution consultation