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Personalised care: talking about the elephant in the room

A Consultant in Paediatric Neurodisability at Great North Children’s Hospital discusses Personalised Care, based on her own family’s experiences as well as those as a healthcare professional:

As a doctor, I am not sure I would have ‘got it’ without my son being born with severe complex disabilities 18 years ago and realising how desperately the current system needs to change.

Being on the receiving end of health and social care services often means you have little choice. They can be inflexible, unsuitable for your individual needs and wasteful. We had duplicated appointments and, for two whole years, had a bath chair which didn’t fit our bath.

You sometimes battle against the system until you get what you know you need. I endured 10 months of stress and endless phone calls for a suitable replacement wheelchair for my son, who was in great discomfort.

Or do you decline what you’ve been offered, and receive nothing? We opted out of unsuitable respite care, so our budget was stopped, instead of being allowed to redirect it to home carers as requested.

We have not been unlucky. Everyone I know with complex health needs or disabilities has their own comparable stories.  Most bad experiences are rooted in professionals trying to fit people into the local service delivery box.

Avoiding this involves really listening to people and acknowledging the expertise that they have about their own needs and circumstances. We must recognise and value that the people best able to problem solve effectively, with the motivation to sort it out, are often the patients themselves.

Traditionally, as doctors, we have been in possession of all the information, in charge of problem solving and decision making, all in people’s best interests, but paternalistic. Moving away from this may not feel comfortable or instinctive, but we should not see this as a threat.

Personalised Care does not undermine our professional role. It describes a shift towards a more balanced relationship, where the patient is an ally in fixing a complex situation, not just a passive recipient of care and services.

This means people co-producing their own care and support plans, setting the outcomes and sharing the responsibility for decisions, with professionals giving them enough appropriate information to do so. Yes, it can be more time consuming initially, but, longer term, this investment reaps benefits.

I sometimes meet resistance explaining this to colleagues and, to overcome this, I use an example involving elephants. Yes, elephants!

After reading that initiatives to reduce migration of rural African women to urban prostitution had failed, a visiting American finally asked one of the women what would help. To her surprise, she asked for something to stop the elephants from raiding her crops. Agriculture is traditionally a female role; when this became unreliable, the women looked elsewhere for income.  Initial attempts with expensive, unreliable electric fences were improved on by, again, using local knowledge that elephants avoid bees. Beehive defences have additional environmental and financial benefits, so everyone wins. This is not something even the most educated, well-meaning outsider would have come up with.

For us as a family, Personalised Care meant a tailor-made home care package through a personal health budget (PHB) instead of a college with respite or residential facility.  My son has a small team of carers, who understand his complex needs and have a long term and closer relationship with him and us. This is a world away from the endless staff turnover and training issues which plague agencies and residential care. He is no longer dragged out of bed to catch a bus if he’s had a seizure during the night.

His poor weight has improved and his periods of agitation have reduced markedly. It is also much cheaper than a traditional residential plan. I know this solution would not work for everyone, which is the whole point of personalising care. We knew what would work for us as a family and, eventually, convinced professionals.  Our PHB has been transformational for the health and wellbeing of my son and for the rest of the family.

I did not have to be a health professional to set this up. There are plenty of inspirational stories from a whole range of people who have arrived at their own imaginative personalised solutions to multi-factorial challenging problems.

All we need is professionals to listen carefully and support us.

Dr Helen Leonard

Dr Helen Leonard is a Consultant in Paediatric Neurodisability at Great North Children’s Hospital.

She is also an Associate Lecturer at Newcastle University, a member of NHS England’s Strategic Coproduction Group and a mother of three, one of whom, Matthew, is a young adult with severe, complex disabilities.

Helen has worked in the NHS since 1993 and has received services from health or social care since Matthew was born in 2000.

The experience with Matthew has influenced her life personally and professionally, including spending two years setting up a paediatric services overseas, as well as being a passionate advocate for families with disabled children.

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