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The panellists offer their advice to an incoming secretary of state for health:
Mackey: The first thing would be to stand back and take stock. I wouldn’t go for a reorganisation, but things need to be reconnected. I would also see how money flows to give people chance of success.
Mitchell: Recognise that you have a broader brief than the NHS. Please have a look at social care. Adass are predicting a £4bn gap in social care. How are you going to manage your debate in whitehall?
Lilley: Stop expecting hospitals to balance the books. Move to a regional system with some targeted measurable outcomes.
Ham: Do no harm. Stop trying to prod and poke the NHS to do better. Don’t rely on targets and inspection and competition. Invest in the 1.3 million people who deliver healthcare in England. If you invest in staff, and develop leaders from the bottom up, it produces better results in the long term.
The secret of leadership is to provide space and time for people to do great things, says Lilley.
Mitchell continues that here is hope for the future and that the voluntary sector has a lot to offer:
We are close to the communities. We understand what patients and people want. They want power and control and shared decision making. It’s quite difficult as a charity reaching out to and influencing commissioners. We’re up for the challenge. We need to change and evidence the impact we can create in a way that convinces health system that we’re a worthy cause for investment.
In a session on the barriers to change and how to overcome them, Michelle Mitchell, chief executive, MS Society underlines the importance of working with people and the voluntary sector to make sure the connection between patients and healthy systems works as best as possible.
Jim Mackey, chief executive, Northumbria healthcare NHS foundation trust, adds that the key to success is to “keep it simple” and focus on the people you’re trying to look after.
Roy Lilley, a healthcare commentator, adds that change can and should be implemented, but that it works best when you involve people and explain to them what you’re doing and why.
Chris Ham, chief executive of the King’s Fund, worries where good leaders will come from.
I’m worried we don’t have enough leaders that are going to step into the shoes that will be vacated before too long.
He says almost all of the current policy settings are no aligned around new care models and that they need to be shifted in the direction of integrated models of care.
Dr Allison Smith, head of innovation strategy at the Royal Voluntary Service, says that the main challenges for the voluntary sector in getting involved with health and social care are:
- Being taken seriously by the NHS
- Funding
She says the Five Year Forward View is one of the “most hopeful documents” with regards to including the voluntary and community sector in the NHS. She says it needs to be more fleshed out with more detail about how it would work but that it is encouraging that a number of groups are working it out at the moment.
She talks about the challenge of getting the NHS to realise the benefits the voluntary sector can bring. She says it’s a “no brainer” and doesn’t know why some trusts are resistant to help.
In a talk on what is known about engaging with volunteers and communities, Bobby Duffy, managing director of Ipos Mori Social Research Institute, says that the idea of getting people to help public services is not attractive. Just five per cent want more active involvement in public services. He says that there is more interest, however, when you are more specific about personal social action; a third of people are willing to visit people in local hospitals, for example.
He talks about volunteering trends which are “stubbornly flat” but labels the youngest groups in society the most active and says that they do more than previous young generations.
He lists the drivers of social action:
- Literature on ‘prosocial behaviour’
- Understanding what the drivers are. There is a big gap between what people say will encourage action and what is actually related
- Individual characteristics and context are both important
- Increasing focus on reciprocity and what people get out of it
- Focus on social information about what other people are doing. Social norms are hugely important.
- Social action – getting involved fits with key elements of public mood
Riggare goes on to label primary care “a one stop shop” and says she acts “physician centred” when she sees them because:
If I show them how much I know, they will be terrified.
Bloem continues that the new world of healthcare allows professionals to do the job they chose. He says:
If you have an engaged patient that is well informed, it makes my job pleasurable.
He says it is vital to be transparent about outcomes and costs. He adds that patient engagement should be part of the medical curriculum and questions whether the right people are becoming doctors.
I want the right people to choose medical school. There are still people in healthcare that should have become medical biologists. They don’t see the whole picture. they’re interested in the failure of the human body but don’t see the patient as a whole.
In a question and answer session, Riggare says that patient engagement is not a constant. She says she started engaging in her own health and care on her own whim. Her neurologist encouraged her where many doctors would have discouraged her learning more about her condition. She says that patients should find building self efficacy and confidence rewarding.
Prof Bastiaan Bloem, a consultant neurologist from Radboud University Nijmegen Medical Centre in the Netherlands, adds that healthcare is resilient to change. He says that while patients are being given the tools to take control of their own health, they are still afraid to take a leadership role and of taking the doctor’s role.
He says, however, that patients want to be seen as serious partners and that he has been surprised by how positive patients can be. He adds:
The challenge is to bring specialists and generalists together. You need specialists for sub questions, but you need a generalist to oversee the entire picture. The coupling of the two is one of the biggest challenges.
Sara Riggare has had Parkinson’s since she was 13 and explains that she sees her neurologist for one hour a year. The rest of the time, she practises self-care. She talks about the importance of the patient in healthcare and says:
We want to help healthcare to help us and other patients.
She continues that she has learnt so much more from her fellow patients than from healthcare. She adds:
But that’s not to say healthcare can’t help. It can.
She says that research shows that engaged and active patients have better health outcomes and cost less.
My way of observing myself delays my need for advanced treatment for Parkinson’s disease ... Patient involvement is not optional, it is the way forward. It’s the people’s right. A right to decide about our health. More patients around the world are taking control of our disease by learning as much as we can.
Healthcare needs to wake up and realise that we can do things.
She says the best results are achieved when patients and professionals are empowered by the way they can work together.
Healthcare has to realise that the patient of the future is already here.
In advance of the summit, Sara Riggare, founder of Nerve Labs and a patient activist from Sweden, wrote about her experience of having Parkinson’s since 13 and how it has made her an expert in self-care.
My strongest weapon against Parkinson’s is self observation. Sometimes I use technology and sometimes just a pen and paper. I use a finger tapping app to evaluate how the effects of my medication varies over the day and as a result have been able to optimise my medication regime. My neurologist welcomes discussions based on data I bring to appointments. We both agree that it would be ideal if the data I collected could be pulled into my healthcare record, but Sweden is not quite ready for that yet.
Good morning and welcome to the live blog from the Guardian’s community for healthcare professionals. We’re reporting from the Nuffield Trust Health Policy Summit where the focus this morning is on the role of the patient and community. Coming up are talks from Sarah Riggare, a patient activist from Sweden, and Bobby Duffy, managing director, Ipsos Mori Social Research Institute.
