The 130 or so charity members of National Voices have given us a mandate to press the case for ‘patient involvement’ over the last three years, and with our publication of a new set of evidence, that case has never been stronger.
Who would have thought that the Care Act 2014 and the Health and Social Care Act 2012 could come from the same stable? Two more different beasts are hard to imagine. The Care Act, receiving Royal Assent last week, has been heralded as a milestone in the development of adult social care. A good summary can be seen in this Scope blog.
I work to try and help the public to get involved in improving services and research by using learning and development opportunities.
I want to explain why I decided to start sharing Macmillan’s resources freely and openly and how I worked with partner organisations to make it relevant to all conditions, including cancer. Before I do, I’d like to give some context to why I felt it was so important to share resources and work with other organisations across the charity sector.
When I first started working for a charity, I had a vague notion that in order to help as many people as possible, behind the scenes charities were communicating, co-ordinating and co-operating at all levels.
These days I’m pretty good at managing my children’s lives. I’m an expert on autistic spectrum disorder, and I’m quite nifty with attention deficit hyperactivity disorder (ADHD) too. Let’s be clear, there are still days when I’m a truly incompetent parent, but that’s the same for all of us. On the whole, I know what I’m doing, and mostly so do they.
It wasn’t always like that. In the early days, of questions, diagnosis, research, shock, I got so much wrong. I had no idea what this “condition” meant, for me or for them. But I imagined that once we had a label, we would fall into the safety net of a healthcare system. One that knew everything; one that would help me.
How patient-centred are we these days? Are health and social care becoming more attuned to the needs of service users, carers and communities? These are vital questions as we approach next year’s general election. At our annual conference on 26 March, National Voices members will consider what progress has been made, what still needs to be done and what politicians ought to do, and not do.
My week has been dominated by Care.Data. The exam question: how to rescue the NHS’s (so-far) ill-fated programme to link up patient data from hospitals with patient data from GP-held records? I have had discussions, phone calls and Twitter exchanges. I have reviewed the Health Select Committee hearings. I have been invited to high level meetings.
Out of all this emerges an outline agenda for getting it right. I am eager to share this with you now.
For decades patients and patients’ groups have been calling for something called a statutory “Duty of Candour”. That is, a legal requirement to tell patients or their family if they have been harmed in healthcare.
In the shifting sands of health and social care, there is one thing that remains constant. This is the need to cut across boundaries, remove silos and work in a joined-up manner to deliver genuinely coordinated, patient-centred care. Every time you get people in health to talk about the big issues facing the sector, you can be sure that the issue of joined-up working and joined-up care will come up.
The Department of Health has now published its response to a consultation on plans to extend charging for migrants and visitors accessing the NHS. The response and implementation plans make clear the government’s commitment to bringing in these changes. These will involve huge changes to the way the health services are delivered with far reaching implications. We are very concerned and here is why.
First we should acknowledge that the initial consultation proposed charging for primary care consultations, a proposal which has, thankfully, been dropped now. However, plans to charge for A&E services remain, as well as extending charging to other areas of care.