Learning from Lived Experience This presentation was delivered by - - PDF document

Learning from Lived Experience

This presentation was delivered by Sally Bromley, chair of the Oxford Branch of Parkinson’s UK, at a conference in London, England on 16th March 2018. The main focus of the conference was the implementation of guidance recently updated by the National Institute for Clinical Excellence.

Abstract of the talk

Living with a chronic degenerating condition is hard. From the moment of diagnosis to wherever the Parkinson's has taken you it is relentless and unpredictable, but Sally has found that by keeping active and by helping others she feels better herself. The talk will share Sally's own experience of living with Parkinson's and the patient journey from pre diagnosis, and will also consider patients' varying responses to their condition and its treatment. Based on her extensive work with fellow people with Parkinson's (PwP) Sally co-authored the First Steps course for newly diagnosed PwP. This initiative has been funded by Parkinson's UK. She will report on the impact of this course on those who have attended it and the PwP who present it. First Steps is a good example of a successful initiative predominantly undertaken by PwP themselves, with minimal support from health care professionals. Sally will argue that this energy, enthusiasm and commitment can best be exploited in the context of creative collaboration between patients and professionals. She will provide examples of this from the work of her own Oxford Branch in the areas of research, exercise and physiotherapy, clinical practice, and other therapies and activities such as Dance for Parkinson's. It is not obvious that the NICE guidelines give sufficient importance to this kind of interaction. This talk aims to give delegates a deeper and more personal understanding of what life with Parkinson's is like, and the positive steps that many PwPs already take to mitigate its effects. It challenges the traditional relationship between health care practitioners and PwP, and suggests that an engaged partnership can yield major benefits for all involved. Parkinson's is a complicated and multi-faceted condition and needs creative, diverse initiatives to enable patients to take control of the condition and to provide them with the best possible quality of life.

Slides and transcript

On the following pages you will find copies of the slides used in the presentation, alongside a transcript of Sally’s talk.

For more details…

Videos used in the presentation, along with many other resources and links, can be found at https://oxfordparkinsons.org.uk/hcuk2018

Learning from lived experience

Good morning. I’m going to start asking you some questions.

For PwP, it's probably YE

If you have Parkinson's, your answ probably YES. When you visit the neurologist th questions are never asked. Instea are diagnosed by examining our movement, through watching our and balance; our ability to open a

• ur fingers. Yet for most of us livi

Parkinson’s, it is our reduced abili peeling bit is not too bad, but turn Trying to read a shopping list whe has wandered aimlessly across th Waking up with a damp pillow be Not all of us have the same sympt nuisance, and can compound to m

My journey to diagnosis

I’m going to tell you my Parkinson

• today. My story is not the same a

anybody else’s as we are all differ we all get progressively worse but each have different aspects or sym

• f Parkinson’s.

Today I am pleased to be here, te story early in the day. I’m usually to speak and this is a pity as the p the rest of the day.

ng from xperience

tart by

ly YES

answer is t these stead we ur

• ur walking

en and close s living with ability to ‘do stuff’ that irritates. Peeling vegetables turning the veg in the other hand is hard. when your writing is about as big as microfiche and l s the paper is horrid. because we may have excess saliva makes you unh

• mptoms. Each one is not a major problem but colle

to make you feel as if you have lost control of your o

• sis

nson’s story e as

• ifferent. Yes

but we r symptoms e, telling my ally the last he person living with this horrible condition provides bles for example... the nd looks like a spider unhappy.

• llectively they are a

ur own body. ides the context for

Let’s start at the beginning. I had was resting my wrist at an odd an

• GP. She looked at me, and moved

was almost certainly essential tre I had convinced myself that I had the worst, or so I thought, but tho Nothing could have prepared me

Diagnosis is devastating

You go to see a neurologist who t you have Parkinson’s, and that’s devastating is the news that most hear very little else of the 10-minu

• consultation. At this stage there’s

neurologist can do except offer so

• literature. This is a typical diagno

this must change. I have heard many stories of the s unsuspecting people, at times not words, ‘I’ll see you in year’.

NICE guidance since 2006

The NICE guidance says very little the patient's experience of diagno (though it's very clear and sensitiv palliative and end-of-life care, by contrast). These recommendations are pret the only material that's directly re They haven't changed since 2006, anecdotal experience is that even through the life-changing event o had been aware that my right hand had a tremor at d angle but it gradually dawned on me that perhaps

• ved my wrist and arm about and reported that thou

l tremor, I ought to see a neurologist. had got Parkinson’s by the time I visited the hospital t those three words – You have Parkinson’s – are etc me for the bombshell of hearing those three words.

ting

ho tells you t’s it? So

• st people

minute ere’s little a er some

• gnosis. And

he seemingly unsympathetic clinician who dishes ou s not even looking at them, and closing the appointm

2006:

ittle about agnosis sitive on , by pretty much ly relevant. 06, but our ven this minimal expectation is far from being met f nt of diagnosis. r at times. I thought I aps I should see my though she believed it

• pital. I was ready for

etched on my brain. rds. s out horrible news to intment with the et for patients going

Precursors and symptom

OK, so now I’ve got Parkinson’s. W does that mean in real life?

Early indicators

• losing my sense of smell

people are affected, usua 8-10 years before diagnos

• disturbed sleep – I shout a

scream and lash out. This a couple of years before d shouting in my sleep. Thi strong predictor of Parkin

Movement

• a slightly stooping gait
• walking with my right foo
• not swinging my right arm
• difficulty turning over in b
• losing my balance
• finding it hard to cut food
• I ask the cashier to pack m
• I can no longer play the p
• finding it increasingly diffi

stuck!

• unable to find the second

Communication

• voice changes – mine is q

towards the end of the da

• I’ve lost my singing voice
• having a blank face at tim

idea of how I’m feeling.

• my handwriting is imposs
• Psychological
• forgetting your train of th
• feeling light headed
• tiredness, and falling asle
• losing my confidence
• suffering anxiety – this is
• not always finishing a task

And more...

• excessive saliva causes dr
• I avoid crowds as I find th

ptoms

’s. What ell – many sually about gnosis

• ut and

This started re diagnosis, and I once bit my daughter who was w This is called REM sleep behaviour disorder and is b arkinson’s. foot slightly dragging arm when I walk in bed, more like a beached whale food up ck my bag at the checkout as I’m so slow he piano due to reduced dexterity difficult to dress – fiddly buttons,, zips etc and every

• nd armhole in jackets, coats and cardigans

is quieter, I stutter at times and my speech can be sl e day ice – a great personal loss times – this is called the mask. it makes it hard for p possible to read – it is small, indistinct and wavers ab

• f thought

asleep is is a major problem for many of us task, abandoning jobs, leaving doors and drawers op s dribbling and drooling – is your pillow damp in the d them threatening, so I shop at quieter times. as worried about my is being seen as a verything getting be slurred, especially for people to have any s about on the page rs open the morning?

• Clothes shopping again do

leaving little space to try c process of dressing also ta

• Constant planning – how

due?

• everything, but everythin

Just 24 examples there and I prob Many people suffer mood change

This patient, other patien

I’ve heard from many people sinc diagnosis nearly ten years ago, an recognise that we react differentl tell no-one, some tell their neares dearest, and others tell everyone. few actually seek support – often they don’t want to see their futur

• thers with more advanced Parkin

For some it’s not until they meet specialist Parkinson’s Nurse that t specifically for people with Parkin One of the first things I did was to about doing something I’d be unli fell out of a perfectly good aeropl I’ve ever done! Over the first few years after diag Branch in Oxford. I got to know m

• beyond. From all this a strong me

eventually coming to terms with t through that process, and that mo This required some creative think something to alleviate the anguish in done at quiet times. Having to ask for a seat in the try clothes on, means I usually take clothes home to so takes my energy.

• w will I get there? Will my energy run out? When

thing taking much longer to do probably could think of more. nges so overwhelming that they are treated for dep

atients

since my , and I

• ently. Some

arest and

• ne. But

ften because uture in arkinson’s. eet a hat they even find out about organisations and oppo rkinson’s (PwP). as to take part in a charity event for Parkinson’s UK. unlikely to have done if I hadn’t got Parkinson’s. So roplane at 12,000 feet. It was the scariest yet most e diagnosis I became actively involved with our Parkins w many PwPs and learnt about their experiences of d message came through: PwPs sensed a void betwee ith their condition. It was clear that PwPs wanted su t most don't get it.

• hinking. The diagnosis is scary and we needed to com

guish most of us experience. Before we knew it First he changing room e to try on, as the hen is my medication depression. pportunities

• UK. I thought hard

. So I did a skydive, and

• st exhilarating thing

rkinson’s UK local s of diagnosis and tween diagnosis and d support and nurture come up with First Steps was born!

First Steps

Alex Reed has Parkinson’s and he Parkinson’s therapy centre in Nor

• Italy. Supported by Parkinson’s U

worked with him and other PwPs create a two day small-group wor Oxfordshire for newly diagnosed a their carers. It aims to help them understand more about the condi how to cope with it. First Steps has been running for n from participants. Parkinson’s specialist neurologist, the programme with particular pr atmosphere and the chance to me

Participant experience

At a First Steps reunion event last October, we interviewed some participants about their experienc

• workshop. Here are Ash and Laura

was diagnosed at the young age o

Participants reflect

Participants are guided towards s that their life may need to be reas and changes made. I asked Pam h felt when arriving at the workshop he runs a Northern ’s UK, I wPs to workshop in sed and em

• ndition and
• r nearly 3 years and has received consistently excel

gist, Michele Hu says: “I have seen how much the pa r praise for the wealth of information shared in a re

• meet with other people in a similar situation.”

nce

last rience of the

• aura. Ash

ge of 35. ds seeing reassessed m how she shop. xcellent evaluation e patients have valued a relaxed, open

Making a difference for P

Today the programme has helped 300 people affected by Parkinson come to terms with the diagnosis planned to be rolled out to other locations nationwide, beginning w Plymouth, Aberdeen and Southam But I guess if any of you are still to why it’s successful......? The answer is Parkinson’s. It was importantly, is presented by PwP.

• credibility. This is, I believe, the re

PwP as active contributor

I hope I've been able to paint a pi PwP – especially in the first few ye after diagnosis – as energetic, hig motivated, and determined to tak control of their own futures. The feedback from First Steps particip and other evidence, clearly shows PwP greatly value such initiatives.

• nly report on the work I know ab

my region, but Parkinson's UK has doing equally exciting work for th But we're here today to talk abou for patient-led activities like this? the guidelines give it enough weig

Story time!

When I was in Italy at Alex Reed’s European Parkinson’s Therapy Ce had a class called Breathing for

• Relaxation. The class began – join

Breathe in… Breathe out... Breath Breathe out... Breathe in – at the “breathe out” the man at the othe

• f the table let out a very loud ‘Er

He did it again. I was with a fellow and we both started to giggle. Th and said ‘I was dreaming’... ’I was time we were all laughing. Then h

for PwP

lped over son’s to

• sis. It’s

her ng with thampton. till curious as was conceived by, written by, tested on, evaluated b

• wP. This is what gives the First Steps programme va

he recipe for its success!

ibutors!

a picture of w years , highly take The ticipants,

• ws that
• ives. I can

w about in has a vast network of Branches across the country m r the benefit of their members. [CLICK FOR MORE] bout implementing the NICE guidelines for Parkinson his? I think we should be talking about that, and chal weight. ed’s y Centre, we join in – eathe in... the next

• ther end

d ‘Errgghh’. ellow parkie . This turned to laughter which in turn woke the man was dreaming of cake’… ‘I was dreaming of chocolat en his wife suddenly put her head in her hands and ed by, and most e validity and try many of which are inson’s. Is there a place challenging whether man up. He smiled

• late cake’. By this

and sobbed. She

explained it was the first time sh

• smile. How sad is that. I cannot i

PwP and health professionals

Since I have been Chair of the Oxf Branch I have nurtured relations w local health professionals. I involv in meetings, invite them to our ac and ask them to inform the group the work they do. This has led to mutual respect and trust. We now reserve our August meet professionals are invited to the fo find out first hand what PwPs are My GP is also a GP lecturer and m As an Expert Patient Tutor I atten about my history and I offer inform through this initiative have a bett

Patient involvement in research

I’m lucky to live in Oxford which is major research centre. Parkinson’ funded the Monument Research P

• ver ten years. This project has tw

strands: lab research into fundam disease mechanisms and possible treatments, and a longitudinal stu tracking over 1500 patients, siblin

• n depression, apathy, motivation

Brookes University has a Moveme Many researchers from these gro members present, to give talks an they return with the results of the she’d heard her husband laugh in over a year and h

• t imagine a day or even an hour when I don’t smile

Oxford ns with our volve them r activities, roup about d to a eeting for members to discuss and share their conc e follow-up meeting in September, where they can o are concerned about. d makes use of stories from my experience. ttend sessions when Year 5 medical students examin nformation about living with PD. This way future GP better understanding of Parkinson’s.

t in

ich is a son’s UK has rch Project as two damental ible l study iblings and controls. The University’s School of Psych ation and reward and many other psychological inve ement Science Group. groups have come to our Branch meetings, usually w s and to ask for research volunteers. They do this on f their study! d hadn’t even see him mile or laugh.

• ncerns. Health

can offer solutions and mine me, ask me GPs who have been sychology has studies

• investigations. Oxford

lly with about 80 is on the condition that

Patients reach out

To date just in January I have take in projects looking at motivation a reward, decision making, and me The latter meant I have had to go MEG and MRI scanners. I give presentations to several gro including 120 pharmacy students Reading University, and hospital n their PD Study Days twice a year. I have spoken at the OPDC Resear Many members of my Oxford Bra country doing similar work.

PwP and exercise

There’s no doubt exercise is good

• PwP. Many of our members bene

a gentler alternative to the well- established commercial PD Attack Warrior programmes. Our Branch collaborated with Age UK Oxfords the NHS Physiotherapy Service to and subsidise Big, Bold and Balanc classes around the county. The Ox class has around 36 regulars aged more advanced Parkinson’s. A DV at home.

Voice and dance

Our voice class ‘Finding your Voic popular and we enjoy weekly voic exercise and singing, and even oc public performance. We also enjoy the Dance for Parki classes brought to Oxford from En National Ballet. Like other classe a social element valued by all

• participants. This video clip was f

taken part ion and memory.

• go into

l groups, nts at ital nurses at ear. search days, and at concerts and other events we pu Branch are equally active, and I’m sure there are oth

• od for

enefit from

• ttack and PD

nch has

• rdshire and

e to offer lance e Oxford ged 67 to 92. It suits older people new to exercise an DVD of the class makes it possible for people to con Voice’ is voice n occasional arkinson’s m English asses there’s as for ENB’s Big Give project. e put on. e others across the se and to those with continue the exercise

Partnership in action

A high point of all these collabora was the patient-led conference th Branch staged last year to mark th anniversary of James Parkinson’s “Essay on the Shaking Palsy”. Dev led by PwP, it brought together…

• researchers from local aca

institutions,

• nurses, physiotherapists a
• and people with Parkinso

True partnership in action.

Reflections…

My final message: PwP should do their best to take c

• f their Parkinson’s. Central to th

having a say about their treatmen We want to know: why is one 10 appointment per year considered adequate? We want to know: why is it so ha areas? We are told there is no money an we have nothing – and it’s hard to Are we relying on the evidence of person living with a deteriorating

• rations

e that our rk the 200th n’s seminal Devised and r… l academic ists and other practitioners, inson’s talking about how they take control of the co ake control

• this is PwP

ment. 10-minute red

• hard to get specialist occupational therapy or spee

and that we should do more with what we have, b rd to do more with nothing. e of statistics and failing to see that behind every nu ting chronic condition? e condition. peech therapy in some e, but in some areas y number is a real

Lost and Found

I’m not one to hang on to things t have no control over. Linda Rons singer lost her voice to Parkinson’ a recent interview merely convey

• irritation. For me, having sung in

most of my life, losing my singing has been a kind of bereavement. my ability to play the piano, due t reduced dexterity, has had the sa

• effect. But if I hang on to my regr

anything to eradicate Parkinson’s inner strength.

And the Real Me??

I’m a wife, mother and grandmoth that as my body deteriorates as P will not remember a fine picture o a sense of humour.

Thank you!

To sum up... Am I angry? No. Frustrated – at times; Regretful – not really; Happy – of course; And when I wake up each day, ho feel? Good! Sally Bromley Parkinson’s UK Oxford Branch 16 March 2018 gs that I

• nstadt the

son’s and in veyed her g in choirs ging voice

• nt. Losing

ue to e same regret, I will carry it around like baggage. I must let

• n’s and I wish I didn’t have it. I’ve lost a great deal y
• mother. Though supported tremendously by my fam

as Parkinson’s slowly and insidiously consumes me, m ure of me. Through it all, I have not lost my smile – , how do I let it go. I’d do eal yet discovered an family I am conscious e, my grandchildren – yet – and I still have