Given that healthcare was, for a very long time, a closed shop in terms of opportunities for patient input and examples of the NHS listening to the lived experience, we can but applaud initiatives like NHS Change Day and NHS Citizen. I know a lot of people are cynical about improvement drives and headline-grabbing enterprises, but if there is an opportunity to put the needs of people with dementia and their carers in the spotlight then I am willing to try it.
For those of you not familiar with NHS Change Day, we had the first example of it last year and it received significant acclaim. It’s not just for NHS employees, but for anyone with an interest, be it personal or professional, in UK healthcare. The strapline of the campaign is simple: ‘Do something better together’. Your pledge can be individual or organisational or indeed anywhere in between. In fact there are very few ‘rules’ – the concept is about gathering pledges that improve healthcare. For this year’s UK Change Day you can make a pledge until 31 March 2014.
My pledge for NHS Change Day 2014 is as follows:
“I pledge to help everyone within health and social care increase their understanding of dementia by sharing my experiences and knowledge.”
Absorbing the unique experiences of people who are living with dementia, and those who love and care for them, is vital to lift dementia out of the shadows of stigma and improve care and support for all.
Make YOUR pledge to find 2 minutes to watch the film I made for the G8 Dementia Summit which highlights my experiences as a carer for my father who lived with vascular dementia for 19 years.
NHS Citizen is a far newer concept, and is about gathering ideas that can be fed into NHS policy making. The most popular ideas will be put forward for discussion with the NHS board at the Assembly Meeting. Again there are very few ‘rules’ – it’s about capturing your idea succinctly and then selling it to voters (voters being anyone who registers with the site).
My NHS Citizen idea is as follows:
Improved support for people with dementia and their carers.
People who are living with dementia and their carers come into contact with many different areas of the NHS, from GP and community services, to A&E, inpatient and palliative care services.
Dementia rarely exists in isolation, and many people who develop it have, or go on to develop, other long-term conditions that require specialist care. Over time they may also need emergency treatment for falls or infections.
Improved support can benefit everyone, people with dementia, carers and professionals.
Dementia is YOUR business!
If you are a Doctor, Nurse, HCA, Physio, OT, Speech and Language Therapist, Chiropodist, Audiologist, Optometrist, Dentist, Dietician, Pharmacist or indeed any healthcare professional who provides support for adults (and particularly older adults) you will be meeting and offering treatment to people with dementia.
Dementia is YOUR business and I believe that you deserve the training and insight you need to provide the level of care that your patients deserve and that you would want to provide.
I won’t deny that there is a similarity between the themes of my NHS Change Day pledge and my NHS Citizen idea. Why? Because I believe that both opportunities to highlight the needs of people with dementia and their carers require consistent messages about listening, understanding, awareness raising, training and insight.
What I’m proposing isn’t especially radical, and I’m not suggesting that in some areas of the UK it isn’t already happening. Dementia has had significant focus since the Prime Minister’s Dementia Challenge was launched; indeed those advocating for people living with other diseases and conditions may well wish that they enjoyed a similar spotlight. Being in everyone’s minds, however, doesn’t guarantee progress.
I hear every day from people who are struggling with dementia in their family. I also hear from professionals who are facing their own struggles with an education system that doesn’t prepare them for appropriately supporting people with dementia and their carers, and who must work in systems and environments that are not remotely dementia friendly.
Whether NHS Change Day and NHS Citizen will make a real difference to the lives of people with dementia and their carers is obviously debateable, and potentially nothing will change in the long-term, but I want to be positive and believe that together we really can do something better. My pledge and idea aren’t one-offs, they represent everything my work is about. I believe passionately that change and improvement are possible. Most significantly of all, though, I believe that the vast majority of people who could deliver those changes and improvements want to do so.
Until next time…