Respiratory Futures caught up with Dr Jamie Duckers on behalf of the All Wales Adult CF multi-professional team (MPT) at Cardiff and Vale UHB. Jamie is a Respiratory Physician and Clinical Lead for Rare Disease in Wales, and shares with us some thoughts on the importance of person centred care and why it must remain a priority in the design and delivery of respiratory services.
The landscape of Cystic Fibrosis (CF) care in the UK has changed massively since its first description in the 1930s where children failed to thrive and often died before their first birthday. Thanks to a range of developments (e.g. CF centre care, powerful patient charities, National Registries, research networks, discovery of the CF gene and National screening programmes, standards of care documents and a strong drug discovery pipeline including novel personalised therapies.) I have just left a clinic where I reviewed a person with CF in their 80s with cataracts and difficulty opening medication packs and a 16 year old with supranormal lung function, healthy BMI an even healthier park run time who has never needed IV antibiotics or admission for their CF.
When Aneurin Bevan founded the NHS in the 1940s there was a core value to put ‘patients at the heart of everything it does’. At that time, when the average life expectancy for people with CF was less than five years, the NHS was paternalistic with a “doctor will see you now” ethos. With the NHS Long Term plan and the National Voices campaign there is a vision of a shared responsibility for health and that ‘What matters to someone’ is not just ‘what’s the matter with someone’. The Health Foundation 2016 describes healthcare not being ‘to or for people but with people’. At the heart of this is Person Centred care where people are equal partners in planning, developing and accessing care to make sure it is responsive to peoples individual abilities, preferences, lifestyles and goals. The NHS should support people to develop the knowledge, skills and confidence they need to more effectively manage and make informed decisions about their own healthcare. Care should be personalised, coordinated and enabling and people treated within the NHS with dignity, compassion and respect.
The NHS should support people to develop the knowledge, skills and confidence they need to more effectively manage and make informed decisions about their own healthcare. Care should be personalised, coordinated and enabling and people treated within the NHS with dignity, compassion and respect.
We know there are potential benefits in delivering a shift from ‘what is the matter with you’ to ‘what matters to you’ and achieving a shared responsibility across a health care system. These benefits of person centred care include:-
- Improve clinical outcomes1
- Less use of emergency services2
- More likely to stick to treatment plan3and take therapy correctly4
- More satisfied with care5
- More likely to choose treatments based on their values than those of their clinicians6
- Tend to choose less invasive and costly treatments7
- More likely to engage in positive health behaviours8
- Patient engagement increases health care staff performance and morale9
So, I know ‘what’s the matter’ with the 80 year old and the 16 year old I’ve just reviewed- they both have CF but do I truly know what matters to them both? Our service is offering healthcare to them both but perhaps we are not offering healthcare with them both as equal partners and a shared responsibility. In this respect our progress has not kept pace with the other developments in CF care. Just as we look at peoples genetics in CF and their suitability for the novel highly effective modulators we should look at how we support them to develop the knowledge, skills and confidence they need to manage and make informed decisions around their care. People with long term conditions spend <1% of their time in contact with healthcare professionals and the majority of their care such as monitoring symptoms, administering medications and therapies they or their carers do on a daily basis.
As a multiprofessional team we have endeavoured to develop person centred care and have focused on two key components- self management and shared decision making.
Whilst developing these it is critical to acknowledge that there is a shared responsibility across the healthcare system (commissioners, healthcare professionals, organisational processes and people living with the condition). People with CF need to feel engaged with decisions about their care and able to act on decisions. Education of healthcare professionals is also key and healthcare professionals need to be committed to working in partnership and this may at times feel threatening to the way we have been used to practising. Organisational and supporting processes need to be in place to allow effective use of resources. It is also of paramount importance that commissioning of care reflects that care is more than providing a medicine. As Don Berwick the former administrator for the US Federal Centre for Medicare stated “The ultimate measure by which to judge the quality of a medical effort is whether it helps patients (and their families) as they see it. Anything done in healthcare that does not help a patient or family is by definition waste, whether or not the professions and their associations traditionally hallow it."
So, whilst exciting new personalised therapies are developed we must make sure that we always aim to develop healthcare in partnership with those with lived experience and we keep asking not what the matter is but what matters.
References
1.De Silva D. Helping people help themselves. London: The Health Foundation, May 2011, p6. www.health.org.uk/publications/ evidence-helping-people-help-themselves
2.De Silva D. Helping people help themselves. London: The Health Foundation, May 2011. www.health.org.uk/publications/ evidence-helping-people-help-themselves
3.De Silva D. Helping people share decision making. London: The Health Foundation, July 2012. www.health.org.uk/publications/ helping-people-share-decision-making
4.National Institute of Health and Care Excellence (NICE). Medicines adherence:
5.De Silva D. Helping people share decision making. London: The Health Foundation, July 2012
6.O’Connor AM, et al. Modifying unwarranted variations in health care: shared decision making using patient decision aids. Health Affairs, web exclusive, 7 October 2004.
7.De Silva D. Helping people share decision making, The Health Foundation, June 2012, p.12
8.Hibbard J, Gilburt H. Supporting people to manage their health: An introduction to patient activation. The King’s Fund, 2014.
9.The King’s Fund. Leadership and engagement for improvement in the NHS: Together we can. London: The King’s Fund, 2012