Sam Peaceful-Day lives with Transverse Myelitis and is supported by Anya de Iongh, her self-management coach, to manage her health needs and live well.
Here, Sam and Anya reflect on the difference health coaching has made for Sam’s life.
My new doctor gave me a leaflet. I ignored it, just like I had ignored the depression I was in, due to years of pain and fatigue caused by Transverse Myelitis which makes me one in a million! It was a rare virus that affected my nervous system. But like millions of others my days had become disorganised and shorter - my life mostly put on HOLD.
When Lord Saatchi first mooted his now very controversial Medical Innovation Bill last year, it hardly caused a ripple. Private peers’ Bills rarely get anywhere. However, perhaps because of the combination of Lord Saatchi having friends in high places and his considerable public relations skills and resources, this bizarre Bill still actually might become law. This, in spite of the limited parliamentary time available and the fact the Bill, however well intended, has been denounced as both unnecessary and dangerous by the leading doctors’, patients’ and medico-legal organisations.
At a recent conference, I noticed a great deal of time was spent on promoting awareness of bad practices within the health and care sector. This got me to thinking about the vital role of National Voices members, and the wider voluntary sector, in building networks and promoting examples of the good practice which has improved services for, and lifestyles of, disabled people.
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.
2013 has been another turbulent year in health and care. The widening gap between demand and funding has revealed problems aplenty. We have been living through the massive organizational changes created by the 2012 Act. And the year has been overshadowed by the Francis Report on mid Staffordshire and all the reviews and reactions that came in its wake, including a major reform of regulation.
At National Voices we have been having some great conversations around care and support planning. Here we’d like to introduce you to one of its champions, the award-winning Dr Ian Greaves, of Gnosall Surgery, to share some of his innovative ideas. And congratulations to Ian and his fellow Staffordshire GPs for winning the NHS Innovation Challenge Prize for Dementia last month.
Today the Integrated Care and Support Pioneers have their inaugural workshop. Anya de longh will be talking to representatives from the pioneer areas about what personalisation really means from the perspective of someone living with several long term health conditions. Here, she shares her thoughts:
It is a real privilege to talk to the integration pioneers about personalisation and what that means to me, as someone who lives with several long term health conditions.
I was delighted if rather surprised to see today that I am in a new list of top 30 charity CEOs on social media. Only 2 years ago I was a self-avowed sceptic about social media, dismissive of LinkedIn, averse to Facebook (still am) and wary of Twitter. I reluctantly began tweeting under the National Voices @NVTweeting account in January 2012, only after gentle if irresistible encouragement from our communications lead Jules Acton. Within 5 days I was chafing at the constraints of an organisational account and began tweeting as myself.