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Please stop trying to involve me in my healthcare

Adrian Sieff
Adrian Sieff
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In 1948, the government introduced legislation which put a duty on estate agents to involve people in the purchase or rental of their houses, preventing the agent from entering into legally binding purchases or rental agreements on their client’s behalf.

There had been a growing concern that estate agents were overstepping the mark of their authority. It wasn’t that estate agents were doing something different – they had acted this way since the 1720s when they first emerged as a profession – but policy, if not social expectations, seemed to be changing.

This is a fiction. We would never have allowed estate agents to buy our houses for us any more than we would allow solicitors to determine how our estate will be distributed when we die.

Yet this is our approach to healthcare. The Health and Social Care Act 2012 puts a duty on commissioners ‘to promote the involvement of individual patients in decisions about prevention, diagnosis, care and treatment’. The NHS Constitution confirms this privilege: ‘You have the right to be involved in discussions and decisions about your health and care’.

This sense of ‘involving’ permeates healthcare. Doctors talk of ‘consenting’ patients, patients receive copies of results of their tests and draft regulations ‘permit’ service users to participate in making decisions relating to their care or treatment.

Why is this?

Whether we talk of being involved in our health or participating in it, whether we are partners in it or have agency over it, our language reflects deep underlying constructs of how we understand the world.

Many people talk of a ‘paternalistic’ NHS, but I think this only describes half the picture. I wonder if perhaps we have a system of co-dependency – a combination of belief in medical certainty and a rational fear of our own vulnerability. If, as patients, we conspire with healthcare professionals to wrest us of the responsibility of our own health and care, clinicians need us to adopt that role in order for them to fulfil their duty of beneficence – doing good by doing to.

The duty in the Health and Social Care Act pushes against this comfortable path of co-dependency. At the same time, it risks tying us to a mental model that vests the power to lead in providers, and the duty to respond in patients.

The Mental Capacity Act starts from a different standpoint. Its underlying assumption is that people have agency over their lives: ‘A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.’ The emphasis here is on enabling rather than involving.

There’s no doubt that ‘involvement’ has a place in the NHS – it’s something that moderates our relationship with the structure and design of health services. It’s a recognition of the collective ownership of the NHS, to which we all – if fortunate enough to be in employment – contribute. Like the shareholders and board members in a company, we hold a voice in the way the NHS is run.

But when it comes to managing my health and decisions about my care, involvement runs the other way. This is hard, especially when I am ill, vulnerable, frail, anxious.

At these times, I want and need the support of others – not only my family but also the NHS: knowledgeable clinical staff who can enable me to reach decisions that are right for me; clinical pathways that are designed around my holistic needs and support me to regain as much independence as I am capable of; and organisations that measure their success on their ability to support me to achieve the quality of life to which I aspire.

It’s time for the NHS to stop involving me in my healthcare. It’s time for a new relationship.

Adrian is an Assistant Director at the Health Foundation, www.twitter.com/AdrianSieff





 
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Comments
It’s a recognition of the collective ownership of the NHS, to which we all – if fortunate enough to be in employment – contribute.

Are you suggesting that those who are 'unfortunate' not to be in employment (and presumably pay National Insurance Contributions) do not contribute in any way? What about those who support those who go out to work (usually women), those who educate, care for others and generally do very hard work that lightens the load of the health system (mostly women but some children and men)? You write as if these people are not part of the collective ownership of the NHS and are not worthy of an active, agentic say in how the system should work in light of their own health.
Adrian,

I see that you have tagged this post as "person centred care".

And your last paragraph demonstrates that we are still looking at the picture the wrong way round. We still do not know how to do this.

1. The vulnerable, anxious stage is where you do not know what the future will look like. Reassurance and support are required in bulk to encourage the patient to stand on his own feet.

2.Then there is the learning curve, gained, through months or years of personal experience coupled with the support and knowledge of friends and medical profession,

3. By this time, you have discovered peers who help you with ideas for coping.

4..You become an expert. You design your own future - which is what people who receive person centred care do.

5.. You become a role model.

Unfortunately, there are no CPD points. There is no qualification or exam passed,Nobody knows what YOU know.

To start this journey into the unknown, we require most of all,
RESPECT, a WISE LISTENER, true COLLABORATION, and a recognition of the pathway.

We require encouragement when we fail, and praise when we succeed. We require knowledge about what is possible,.
But most of all, we require PATIENCE.

Then we can take the first faltering steps into what can be a great adventure. - aiming for your aspiration: a quality of life,
.
Only YOU can achieve that.

http://pioneer513.wordpress.com/





Hi Zowie. Thank you for correcting me. You are quite right to point out that people contribute to the NHS in many ways. And our collective ownership of the NHS is independent of any contribution we may make to it through taxes, time, education or caring.
The relationship between the NHS and the empowered patient is an uneasy one; how many GPs sigh as the patient before them has self diagosed after Googling their symptoms and demands a particular treatment? On the other hand, how many patients have put their trust in highly qualified clinical staff to find that they've not improved or even suffered harm?

While I agree that when you're most vulnerable, frail or ill, all you want is someone with the knowledge and skills to make you better, there are areas where being involved in your own healthcare has positive benefits for both the individual and the Health Service. The 'expert' patient living with a long term condition has a vested interest in increasing their knowledge and participation to manage their condition in partnership with their medical support team. If being involved improves wellbeing and reduces clinical intervention that's a win for all involved. The caveat is that it must be a partnership to ensure the right treatment for the right person. And just occasionally the patient actually does know best.
So do I want to be involved in discussing my results and the clinical pathways for my treatment - absolutely. It's my body, my health and I feel I have every right to discuss accept or reject the options offered. Clinical experts may know best, but they're not me and they shouldn't assume that their views and cultural pre-conceptions will tally with mine.
I completely agree with what has been said before, some people don't go out to work but they stay at home and do the work. Child care is so expensive these days that women have to stay at home to look after their children - this is work, they spend their time teaching and raising their children to one day have the skills to go out to school - how can this not be considered in your argument. Raising children is a difficult and important task - much more than some of the jobs of those sat in an office all day yet you don't think they should be considered in their <a href="http://www.healthcareforeveryone.co.uk/">healthcare</a> - that is madness to me.
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