What do people with Parkinson’s want, what do they need and do health care professionals actually know?
One of the joys of the World Parkinson’s Congress (WPC) is meeting people with Parkinson's (pwp) and their families, carers and significant others. The 4th WPC in September 2016 drew participants from all over the world but specifically it was a huge opportunity to speak with so many from the USA and Canada perhaps not surprising as we were in Portland Oregon.Subsequently I had a similar experience in Australia in May 2017 speaking with and listening to pwp at the 200 Years of Parkinson’s Disease: 1817-2017 International Conference in Newcastle, New South Wales.Meanwhile I have the almost monthly pleasure of meeting pwp at meetings in the UK hosted by the Cure Parkinson’s Trust (CPT) and particularly Parkinson’s UK.The way healthcare is delivered and funded is different on each of those 3 continents and even within them – Canada and the USA for example. And yet, whether private or public, State/Territory or Federal/Commonwealth or a mixture of all the above, the needs and wants of pwp and their families are remarkably consistent.So, what have I learned. I guess my principle conclusion is that having Parkinson’s is stressful, stressful for the pwp and stressful for those closest. Hardly a rocket science conclusion! Yet the pwp and those closest may experience different levels of stress at different stages of Parkinson’s and within those stages at different levels on different days. Moreover, it is clear from my recent conversations in the USA, Australia and the UK that regardless of country the stress being experienced by pwp and those closest to them may not always run in parallel – and that mismatch can become a source of stress too.There is not enough space to go through the whole Parkinson’s journey but paradoxically and perhaps counterintuitively the longer the Parkinson’s duration the better the chance that everyone is on the same page! In Parkinson’s (and indeed in life generally) planning for later life and making explicit one’s wants and preferences is key to quality of life for all of us. Many of us imagine we will end our lives aged 96 climbing up to Alpe D’huez as we power through the Tour de France. A little more planning is probably required and that goes for all of us and not just pwp. At this stage of later Parkinson’s pwp and those closest tend to be rather good at planning-ahead, and their qualities of life benefit as a result.We know that disease severity, patient reported quality of life, carer age and the presence of non-motor symptoms will all impact on carer strain and emotional wellbeing. Meanwhile, and often forgotten, the impact of receiving the diagnosis is one of the most challenging events pwp face. Overstretched time-pressured healthcare professionals do not always get it right. How not to break bad news is brilliantly depicted in the movie The Theory of Everything where the specialist drops the bombshell diagnosis (of motor neurone disease) in the hospital corridor. Even the best consultation cannot always second guess the pwp’s response – see Shake Well Before Use – by the wonderful and sadly missed late Tom Issacs and Oh Lucky Man – by Michael J Fox. The most difficult challenge is when the pwp does not accept the diagnosis while the spouse and wider family do. A pwp who seeks multiple consultations in the hope that the diagnosis is not Parkinson’s can lose over 2 years during which s/he does not engage with the local specialist nurse and therapy services and during which the carer stress can go off the scale as a result.So, what can we do as healthcare professionals?First recognise that even if someone with pwp attends the consultation on their own they are still part of a bigger group of family, friends, workmates and many significant others.Second recognise that the pwp and those around them may have different needs and wants. We often them all as a single set of problems yet it can be when these needs and wants are very different that stress for both the pwp and carer can be at its greatest. Moreover, use all the resources available in particular from the charitable sector (see below for just a few). Stress can be treated but it is better prevented.Third information becomes knowledge which becomes understanding and application. Given this, all can gradually rally around that journey of discovery to end up on the same page. Continuity is helpful. Consulting the same specialist, the same nurse, the same physical therapist is highly valued and whether this council of perfection can be achieved differs between healthcare systems. Nevertheless, the concept of the same team is perhaps more realistic – a group rather than an individual all doing things in the same way and sharing what has been done by whom to produce a common way forward.Fourth, communication is key. I like lists to ensure that the pwp has had answered all that is of concern and often it is not what I thought we were going to discuss (see tips on this at CPT: https://www.cureparkinsons.org.uk/News/assessing-quality-of-life-in-Parkinson’s). Moreover, I return the favour! In many healthcare systems individuals have a primary care physician/general practitioner (GP) though whom all correspondence is routed. I copy my letter to the GP to the pwp so that ‘there is no decision about me without me’ and everyone is literally on the same page. Again, hardly rocket science and commoner in some healthcare systems than others. Clinicians sometimes baulk at doing this but I ask; what would you want if you were the patient? The letter provides a record of what was discussed, answers to the issues that the pwp has brought to the consultation and as a bonus forces the specialist to communicate in clear English and not to hide behind clinician-speak!There are clear practical advantages too – clarity over the medications’ doses and timings for example. The letter can also nudge and prompt, for example promoting exercise for physical and cognitive benefit (see British Journal of Sports Medicine May 2017), something that those closest to the pwp can also do! If well written it also means that the pwp does not have to keep explaining what is wrong – they can just pull out the letter and give it to whoever they are speaking with.Finally, ‘Let’s Talk’ often means just that – everybody goes into ‘transmit’ mode. Most pwp and their carers want someone to listen; even if there are no easy answers just articulating what Parkinson’s means for them (yes them – plural) can be therapeutic. And do you know what – I think this is the same whether the initial greeting is ‘Hi’, ‘G’day’ or simply ‘Hello’.
- Boots WebMD, Carers' Guide: Stress tips to help you cope
- HelpGuide.Org, Caregiver Stress & Burnout
- Parkinson's UK, Caring for someone with Parkinson's
- Parkinson's Australia
- National Parkinson Foundation, Caregiver Stress
- National Parkinson Foundation, Caregiver Stress Inventory: Self Assessment
- BBC News, Prince William says keeping a stiff upper lip can damage health
- Carers Trust, Reducing Stress
- Google search, "Caregiver stress syndrome"
- AARP.org, 6 Signs of Caregiver Burnout
'The things you can't get from the books'
Parkinson's Academy, our original and longest running Academy, houses 17 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.