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Fibromyalgia Patient engagement outcomes

report

November 2019

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CONTENTS

1. Introduction ........................................................................ 2

2. Purpose ............................................................................... 3

3. Activity ................................................................................ 3

3.1 Patient survey.......................................................................................................................... 3

3.2 Patient workshop ..................................................................................................................... 4

4. What we learnt .................................................................... 5

5. Next steps ........................................................................... 7

6. Acknowledgements............................................................ 7

APPENDIX 1 ............................................................................. 8

EQUALITY PROFILE OF THOSE WHO COMPLETED THE SURVEY ................................................................................. 16

APPENDIX 2 ........................................................................... 20

APPENDIX 3 ........................................................................... 24

USEFUL CONTACTS ............................................................. 25

Author: Kelly Scanlon, Head of Communications and Engagement, NHS Bromley CCG

Contributors: Matt Bourne, Deputy Head of Planned Care, NHS Bromley CCG and Nick

Downing, Vita Health Group

1. Introduction

Bromley CCG is working with Bromley Well, Vita Health Group and Kings College Hospital

NHS Foundation Trust to design a new pathway of care for patients with fibromyalgia or

similar symptoms. This is part of the wider One Bromley Outpatient Transformation

programme which currently focuses on four specialty areas – one of these being

rheumatology. One Bromley is the integrated care partnership for Bromley which is brining

services together to work in a more joined up way for the benefit of patients.

The aim is to work together to improve how people diagnosed with fibromyalgia or who have

the symptoms are cared for. We want to deliver a more joined up pathway of care from the

first presentation to health services through to self-management of the condition. We want

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Peer support is so helpful but it

needs to be facilitated so that

everyone gets a chance to

speak. It’s also really important

to end on a positive note so you

leave the session feeling upbeat.

to avoid people having to go to hospital unless it is really necessary, reduce reliance on

medication and provide useful information on how to manage these symptoms and help

reduce any painful flare ups. Current figures from GP lists shows there are 1,337 people in

Bromley diagnosed with fibromyalgia.

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain may

be worse at some times than at others and may change location.

As part of our ongoing commitment in Bromley to ensure that patients are actively

influencing the redesign and development of services, this report sets out how we have

engaged with people who have a diagnosis of fibromyalgia (or the symptoms) to hear their

views and how this will be used to inform the redesign of the fibromyalgia care pathway.

2. Purpose

The purpose of the patient engagement was to reach out and

hear from those with fibromyalgia to help inform the redesign

of the care pathway for this condition.

A number of clinicians, including GPs, Rheumatologists and

allied health professionals have been meeting as part of the outpatient transformation

programme to consider the improvements needed in the care of patients with fibromyalgia.

The purpose of involving patients in this work was two-fold:

To hear about the current experiences of people with fibromyalgia and what could be

improved.

To test and shape proposed improvements directly with those who have lived

experience of the condition – either themselves or through a family member.

3. Activity

Patient feedback was captured through an online survey and a patient workshop.

3.1 Patient survey

A patient survey ran for four weeks during Sept/October 2019 and received 39 responses. It

was targeted at people with fibromyalgia who are registered with a Bromley GP. Outcomes

were used to inform the discussion at the patient workshop held in October.

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The aim of the patient survey was to gather feedback from patients on their experiences of

having fibromyalgia (or the symptoms) and what improvements could be made. It covered a

range of areas including how they managed symptoms, how they were diagnosed, what

improvements (if any) they had experienced since diagnosis, the impact it has on their life

and any improvements that could be made to help them manage the condition.

A summary of the questions and the responses received through the survey is available at

Appendix 1.

3.2 Patient workshop

A patient workshop was held on 25 October 2019 with members of the Bromley Well

Fibromyalgia support group and others who had completed the survey and were interested

in attending. 13 people attended the workshop. The detailed outcome of the discussions is

available at Appendix 2. Slides used at the session are available in Appendix 3.

Bromley Well offers Bromley residents with fibromyalgia a range of support including support

with their mental wellbeing and group education support1.

The purpose of the workshop was to focus on four main areas of proposed improvement to

the care pathway and test these with attendees.

The session started with a presentation from Nick Downing, Head of NHS services from Vita

Health Group and Matt Bourne, Deputy Head of Planned Care at NHS Bromley Clinical

Commissioning Group. The presentation covered:

The current fibromyalgia pathway

Proposed improvements

Questions

Discussion topics

Deborah Jardine-Barnes, Consultant Nurse from the Bexley Pain Management Clinic joined

the workshop. Following the group discussions, Deborah provided some feedback on the

model of care currently available in Bexley which is being considered by Bromley as part of

the improvements planned for treatment of fibromyalgia.

Kelly Scanlon, Head of Communications and Engagement at NHS Bromley Clinical

Commissioning Group explained how the group discussions would run and at the end of

session made a commitment to regular updates being provided to everyone at the session

as the work progresses.

Attendees were split into two groups to focus on two questions each. These were:

Group 1

1 Visit www.bromleywell.org.uk for more information

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The condition affects people of all

ages and we need to provide

support for younger people. We

need to tell them about the support

that is available as they can get

more anxious if they don’t

understand the symptoms .

Group education – provide more information about Fibromyalgia through face to face

education sessions covering symptoms, understand the condition, how to manage flare ups,

emotional and mental wellbeing advice and medication

What do you think of this proposal?

Is there anything else that should be included in these sessions?

Who should run the sessions?

How do we make them accessible?

How do we make people aware of them?

Dedicated Online resource – providing information and support online for managing the

symptoms and side effects of Fibromyalgia such as improving sleep, persistent pain, living

with long term condition, health anxiety etc

• What do you think of this proposal?

• Do you think people will use it? Would clinical support

through an online resource assist? Would you use this?

• Is there any other information that would be useful to

provide online?

• Are there any issues we need to be aware of?

Group 2

Psychological support – how do we better meet the psychological needs of people with

Fibromyalgia?

• What type of psychological support would be helpful?

• What impact does the condition have on your mental health?

• Have you had problems accessing psychological services in Bromley?

• How important is peer support in managing any psychological issues?

Peer support

• How important is peer support to you?

• What could this look like?

• How do we let people know about peer support that is available?

4. What we learnt

People with fibromyalgia who responded to our survey and who joined our patient workshop

provided us with rich information which will be proactively used to inform the redesign of this

pathway of care.

It is important to review all of the outcomes from the survey and the workshop, but some of

the key headline learnings are:

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“I have managed to reduce all my

many medications down to just one

which has made me feel much

better about myself. With my

reliance on medication reduced I’ve

had less side effects. The pain is

still there but I’m keeping active and

feel in a better place because of it.

The importance of improving GP education on this condition is critical. This was a

recurrent theme through many questions in the survey and was also picked up

through the patient workshop.

To have the condition taken seriously.

More time needs to be made available with GPs during appointments to discuss the

symptoms and the impact of the condition.

Employers need to be educated on the condition – the condition has a serious impact

on the ability of respondents to work either full/part time or at all.

The range of symptoms of fibromyalgia has a disruptive or very disruptive impact on

people’s lives.

Patients are waiting too long to be diagnosed – which could be down to the

complexity of the condition. Almost half of the survey respondents waited three

years or over.

Just over a quarter of survey respondents had to see five or more clinicians before

getting a diagnosis.

Over 70% of respondents had been diagnosed by a rheumatologist.

There needs to be better information available on the condition which is easily

available.

Peer support and group education is very welcomed, but not many people know

about the support provided by Bromley Well.

The psychological support available through local services is not always enough.

People need more face to face sessions, shorter waiting times and access to more

support when it’s needed.

Hydrotherapy helps to relieve the symptoms and needs to be easier to access with

regular sessions available.

Acknowledgement that self-care and self-management is important but clear

information is needed to support this.

Mixed views on medication with some not wanting to

take it but feeling it was necessary to manage the

condition.

Interest in online support and tools/techniques to

help manage symptoms and reduce flare ups. Need

more information about what this could look like.

There was a feeling of desperation and frustration

amongst some respondents about coping day to day

with the condition.

There doesn’t appear to be any correlation between

having Fibromyalgia and your weight. There needs to be

further investigations behind being overweight and support offered to those who need

to change their diet/lifestyle.

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5. Next steps

This outcome report will be taken to the Bromley Outpatient Transformation group which is

chaired by Dr Richard Campbell, Consultant Rheumatologist at the Princess Royal

University Hospital. It will be fully considered by the multi-disciplinary group who are directly

involved in the redesign of the Fibromyalgia care pathway.

There will be a report back to the Bromley Well Fibromyalgia group and the patients who

attended, in early 2020 to let them know how their feedback is being used.

A ‘you said we did’ report will be provided on completion of the work.

6. Acknowledgements

Our thanks go to all those members of the public who completed our survey and who

attended the workshop in October.

Thanks to Diana Norris, Health and Wellbeing Advisor and Toni Walsh, Partnership Manager

at Bromley Well for enabling us to use the Fibromyalgia Patient Support Group for the

workshop.

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APPENDIX 1

Fibromyalgia patient survey

The patient survey ran for four weeks from September to October 2019. It was aimed at

people with fibromyalgia or those who have the symptoms. The aim was to capture

feedback of their experiences of the care they receive and what improvements could be

made. The survey was promoted widely using website and social media information. It was

also sent to those attending the Bromley Well fibromyalgia support group, to GPs and the

hospital services for forwarding onto patients with the condition. 39 people completed the

survey.

Q1: Have you been diagnosed with Fibromyalgia?

Q2: Impact of your symptoms before diagnosis

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Q3: When seeing your GP for the first time with your symptoms, were you able to

describe these?

Is there anything that would have helped improve the way you were able to describe your

symptoms?

GP asking more questions about my symptoms and listening to me.

Not making assumptions about the symptoms (ie due to menopause)

Being able to explain my symptoms without brain fog.

Better awareness of the condition amongst GPs.

Q4: Before being diagnosed or starting any treatment, did you do any of the

following and if so how successful was it?

Further comments:

Determination to keep active.

Very difficult to keep going and remain positive.

Better GP education is needed.

Diagnosed through the INPUT course at St Thomas’ hospital.

Anxiety about the condition and the tests and medication associated with it.

Q5

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Q5: If you have a diagnosis of fibromyalgia, how many clinicians did you have to

see before getting this diagnosis?

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Q6: If you have a diagnosis of fibromyalgia, who diagnosed you?

Other examples of who made the diagnosis:

INPUT course at St Thomas’ Hospital.

Pain consultant

Self-diagnosis (1 person)

Q7: How long did you suffer with symptoms before being diagnosed?

Q8: We want to know about your experiences once you were diagnosed with

fibromyalgia – please tick all that apply and provide any other information.

Other experiences included the following themes:

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Nothing further was done.

Better GP education on the condition.

INPUT course at St Thomas’ hospital.

Self-educated myself on the condition

Used hydrotherapy, pain clinic and pain group

Injections

Push for medication due to young age

Q9: Have your symptoms been better managed since getting diagnosed or getting

treatment?

Q10: Can you explain what has made the difference?

Other themes:

Just get on with it.

Need for more psychological support – I’m using private services after NHS course

finished.

Rest.

Privately funded trauma therapy.

Physiotherapy

Q11: What impact has the condition / symptoms had on your ability to work?

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Q12 If you have been prescribed medication, please describe how effective this is.

Q13: If you have been prescribed medication, how do you feel about taking it?

Other feedback themes:

Medication doesn’t work.

Q14 Do you think there is enough being done for people with fibromyalgia in

Bromley? If not what else could be provided?

Other feedback themes:

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GP education and taking the condition seriously.

More education and self-help groups for those with the condition.

Employers could be more supportive and sensitive.

Being recognised as a life changing illness

Access to hydrotherapy

Q15: Do you think your GP understands your condition and symptoms?

Q16: Is there anything else your GP could provide you with to help you with the

condition and symptoms?

Feedback themes:

Counselling and listening.

Signpost to self-help and other support groups.

Better access to hydrotherapy.

More time in appointments to discuss symptoms.

Home help.

More understanding and sensitivity about the impact the condition has on your life.

Relaxation techniques.

Advise on healthy lifestyle.

Pain relief.

Regular wellbeing checks.

Better education of GPs on the condition

Support after diagnosis.

Q17: Do you think that support from other people with the same condition and

symptoms would be helpful?

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Q18: Are you aware of the fibromyalgia support group provided by Bromley Well?

Q19: Would you be interested in digital support to manage your condition?

Q20: Please share any other useful information – in particular any improvements

that could be made from getting diagnosed to how you manage today.

Themes included:

Better understanding of the condition – both health professionals and patients.

Managing the constant pain and anxiety.

Impact on housing, employment as well as health.

Better advice on managing symptoms.

More treatment, physio, pain control etc.

How to better manage flare ups.

Joined Fibromyalgia UK online.

Reduced costs for accessing exercise classes.

Treat each person holistically and take account of all symptoms from various

medical appointments (more integrated care)

Sufferers to be taken seriously despite a young age

Improved fitness for work arrangements – so that employers are more considerate of

the condition.

Being able to register as disabled with the condition.

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EQUALITY PROFILE OF THOSE WHO COMPLETED THE SURVEY

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APPENDIX 2 Patient workshop outcomes

Before breaking into two groups, questions were invited from attendees. Points raised were:

People unaware of the Fibromyalgia Support Group and the need to promote this

wider. There also needs to be a feedback loop to this group to keep people

informed about improvements and changes being made.

Fibromyalgia can just be one part of a condition – people need to be assessed

holistically rather than just treating one part.

You cannot tell from a blood test if you have fibromyalgia.

A really good information leaflet about the condition would be helpful which tells you

about the condition in more detail and what support is available in your area.

Varying advice offered depending on which GP you see.

Lack of understanding of the condition.

Need to educate GPs on the condition.

Sometimes feel like a guinea pig with the variety of medications offered.

Don’t want to rely on medication.

It is a challenge to co-ordinate all the services together that could provide care for

people with fibromyalgia.

Group 1

Group education – provide more information about fibromyalgia through face to face

education sessions covering symptoms, understand the condition, how to manage

flare ups, emotional and mental wellbeing advice and medication

What do you think of this proposal?

Is there anything else that should be included in these sessions?

Who should run the sessions?

How do we make them accessible?

How do we make people aware of them?

There was support for this proposal.

Suggestions about what could be included in the group education sessions:

More specific information about fibromyalgia that can be taken away

Mindfulness

Education on medications

How to manage pain

Sharing stories and experiences.

How to manage expectations and impact of the condition including:

o Forgetfulness/brain fog

o Stress

o Depression

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o Exercise

o Activities of daily living

o Diet/nutrition

o Sleep

o Medication – including why it’s needed, side effects etc.

Sessions could be signposted by Bromley Well, Health and Wellbeing Group and have a

separate fibromyalgia education group.

Sessions could be around 90 minutes in length and kept informal.

Dedicated Online resource – providing information and support online for managing

the symptoms and side effects of fibromyalgia such as improving sleep, persistent

pain, living with long term condition, health anxiety etc

• What do you think of this proposal?

• Do you think people will use it? Would clinical support through an online resource

assist? Would you use this?

• Is there any other information that would be useful to provide online?

• Are there any issues we need to be aware of?

It would be useful to link the education through to digital platforms and for some patients

actively signpost and walk it through as part of the diagnosis/early pathway.

The online resource should be a mix of independent access versus supported access which

is patient led. An online CBT resource would be welcomed as there is a long waiting time for

accessing Talk together Bromley (up to a year?) and cost of private counselling is

prohibitive.

Include online information on:

Sleep

Stress

Anxiety and depression

Health anxiety

Cognitive behaviour therapy (CBT)

Access to free exercise (groups etc) and information on work and income would be

welcomed.

Group 2

Psychological support – how do we better meet the psychological needs of people

with fibromyalgia?

• What type of psychological support would be helpful?

• What impact does the condition have on your mental health?

• Have you had problems accessing psychological services in Bromley?

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• How important is peer support in managing any psychological issues?

There were mixed experiences of accessing psychological support. Long waiting times to

access cognitive behavioural therapy and those seeking help were desperate having

suffered with the condition for a long time. Stress and anxiety can trigger the physical

symptoms so it’s important that psychological impact is addressed.

Often there isn’t time, when visiting your GP about your physical symptoms to discuss the

mental impact of the condition.

Concern was expressed about the lack of understanding of the condition and then how this

makes people feel.

You have to learn to pace yourself – often this is done the hard way.

There were positive reports on using hydrotherapy which soothed the symptoms, although

the referral to the Orpington pool takes some time and the Guy’s Hospital pool is too far to

travel to with this condition. It was suggested it may be useful to have fibromyalgia sessions

at the Orpington pool.

There was a mix of views about individual and group psychological sessions with concern

expressed that during group sessions you can end up dealing with other people’s problems

which makes you feel worse.

Long waiting times for physiotherapy services.

There was a preference for face to face psychological support rather than on the phone.

People of all ages have this condition – at least two members of this group had young adult

children who were managing the condition. If group sessions were considered, then it

should be in similar age groups with flexibility over what would be covered.

Young people with the condition need to be reached to let them know about what is

available to help them. Some suggestions were made about how they could be reached

including through social media, GP, schools and colleges and through local health services.

Peer support

• How important is peer support to you?

• What could this look like?

• How do we let people know about peer support that is available?

Peer support is important. Some attendees were not aware of the Fibromyalgia support

group and suggested it is promoted more.

Fibromyalgia UK provides some information and has a helpline with people there who can

talk things through with you.

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In group discussions, there are some people who take over conversations and others that

don’t contribute or speak up. It was suggested that having sessions facilitated would be

important to bring in the quieter participants.

Important that any peer support groups always end on a positive note as it can take a lot out

of you both physically and mentally.

Keen to not just have conversations about fibromyalgia but also other things that interest

people.

Peer support groups should provide an option for people to come and go as they can

manage – so that if they do miss a number of sessions, they feel confident to just join back

in when they are able to.

Suggested that peer support sessions could be videoed so that people who cannot attend

can watch them back at a later date, or have skype or similar so people can dial in who

cannot physically get there.

Suggested that groups of GP practices (primary care networks) could work together on

providing more localised support groups for the condition – especially younger people who

may not want to go onto medication and instead access peer support/talking therapies.

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APPENDIX 3

The slides used at the October workshop were as follows:

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USEFUL CONTACTS

Bromley Well

Bromley Well provides help for you to stay emotionally and physically well and to remain

independent.

9am-5pm 7 days a week

Telephone: 0300 330 9039

Email: spa@bromleywell.org.uk

Visit www.bromleywell.org.uk

Fibromyalgia Action UK

This is a national charity raising awareness of fibromyalgia.

Visit www.fmauk.org