Please stop trying to involve me in my healthcare

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