1. All Supportive Care in chronic lung disease COPD – Concept of a support group
Gavin Hunter
Respiratory Nurse Specialist
Queen Elizabeth University Hospital

2. NICE Definition of Supportive Care
“Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.”

3. NICE Definition Aspects of Supportive Care
Self help and support
User involvement
Information giving
Psychological support
Symptom control
Social support
Rehabilitation
Complementary therapies
Spiritual support
End of life and bereavement care

4. All Supportive Care Patient Identification Ensure no reversibility
Supportive Clinics
Support Groups
End of Life Planning

5. The Size of the Problem COPD
COPD affects people in Scotland
Predicted increase of 33% in twenty years
Most common cause of presentation to hospital in Scotland
Responsible for bed days in GG+C
Bed occupancy increasing
Accounts for 6% of all deaths in Scotland (4 500 / annum)

6. Palliation of COPD compared to Lung Cancer
COPD patients are as likely as lung cancer patients to wish palliation rather than active treatment (1)
More likely to die on NIV and with dyspnoea (1)
COPD patients less likely to die at home (2)
Healthcare is initiated as a result of exacerbation rather than as a end of life plan (3)
1 Claessens et al. J Am Geriatr Soc 2000;48: Suppl. 5 S146–S153
2 Gore et al. Thorax2000;55:1000–1006
3 Skilbeck et al.Palliat Med 1998;12:245–254.

7. Factors associated with poor symptom control / prognosis
Severe Disease - FEV1 <30% pred
More than 3 admission past year
LTOT
MRC grade 4-5
Right heart failure
Previous NIV or ITU
> 6 weeks systemic steroids last 12 months

8. Clinical Uncertainty Patients managed from crisis to crisis
Last-minute decisions about life-support
COPD progresses at a highly variable rate. Some with severe disease remain stable for months or years while others decline rapidly. Exacerbations that bring about respiratory failure occur suddenly and unpredictably. 8

9. All Supportive Care Patient Identification
Ensure diagnosis / possible reversible component
Supportive Clinics
Support Groups
End of Life Planning

10. Type 2 Respiratory Failure
Pulmonary
Phenotypes
Type 2 Respiratory Failure
Recurrent
Exacerbations
Rapidly
Declining
FEV1
Chronic
Bronchitis
Emphysema
Bronchiectasis
Azithromycin
Nebulised antibiotics
Consider
home NIV
?high dose ICS
?only ICS
if eosinophillia
Transplant
Bronchoscopic
LVRS
Mucolytic

11. All Supportive Care Patient Identification Ensure no reversibility
Supportive Clinics
Support Groups
End of Life Planning

13. Respiratory Supportive Clinic – “severe COPD clinic”
Multidisciplinary Approach

14. Severe COPD clinic
“you have an irreversible lung condition which is causing you a lot of distress we should....”
“...accept that there is nothing that we can do to improve the disease and focus on using medications to improve your quality of life.”
“...try some alternative medication that may or may not help but may give you side effects”

15. “Severe COPD” clinic Initially run 2006 – running still
Respiratory Consultant
Clinical resp nurse specialist
Palliative care
Dietetics
Physiotherapist
Benefits

16. Impact on Hospital Admissions
COPD Related events per year
Pre Clinic
Attendance
Post Clinic Attendance
Admissions Total 62 28
Admissions Ave
1.4
0.6
p=0.003
Hospital Days Total
475
186
Hospital Days Ave
10.5
4.1
p=0.009

17. Qualitative Patient Interviews
“You don’t have to wait too long to see the doctors”
“There is not anyone I’ve seen in the team that’s not been nice”
“I was going on holiday to Flamingo Land and they got me a wheelchair”
“They gave me a walking tripod”
“a doctor asked me if everything got bad would I want to go to a hospice or a hospital. I wish my dad would have sat down and discussed these things with us”
“it’s good to get a chance to talk about things you don’t talk about in hospital”
“they take time to talk to you, it doesn’t feel like a conveyor belt”
“why do you call it End Stage”

18. All Supportive Care Patient Identification Ensure no reversibility
Supportive Clinics
Support Groups
End of Life Planning

19. COPD Support Group Started 2017 Set up costs- Dolby vivisol / BLF
1-2 days of nurse time per month
Budget approx £600 / yr
Pending assessments
Qualitative interviews
Depression and Anxiety Scores
QOL
Admission rates

20. COPD support Group Similar groups – Lung Ca / ILD - excellent response
- well attended
Initial invites to those on “severe COPD” clinic template
Similar programme to above groups
Runs parallel to “severe COPD” clinic

21. COPD Support Group 2017 Less focus on education about disease
Massage therapy available
Class Size 8-12 so far
“Drop in” service from supportive clinic
MRC Grade 5 SOB

22. COPD Support Group Program 2018
External and Internal presentees
Travel / Holiday / Insurance
Tai Chi
Gardening
Benefits/Housing
Benefits of exercise
Occupation Therapy
Singing
Nutrition
Oxygen
December- Christmas party

29. All Supportive Care Patient Identification Ensure no reversibility
Supportive Clinics
Support Groups
End of Life Planning

30. Anticipatory Care Planning
record of the preferred actions, interventions and responses that care providers should make following a clinical deterioration or crisis

31. Gold Standard Framework
The surprise question: ‘Would you be surprised if this patient were to die in the next 6 – 12 months’
Choice/ Need:
The patient with advanced disease makes a
choice for comfort care only, not ‘curative’
treatment, or is in special need of supportive /
palliative care
Clinical indicators - Specific indicators of
advanced disease

32. Anticipatory Care Planning
Severe COPD clinic:
Increased interaction and trust between clinicians and patients / carers
Relaxed manner allows for more in-depth communication
Patients more open in conversation
ACP’s in this arena show increased numbers and “quality”

33. Nice Definition Aspects of Supportive Care
Self help and support
User involvement
Information giving
Psychological support
Symptom control
Social support
Rehabilitation
Complementary therapies
Spiritual support
End of life and bereavement care

34. Summary Patient Centred Care Ensure No Reversible Factors
Ensure Appropriate Patient Selection
Patient Centred Care
Best Supportive Care
Supportive Clinics
Anticipatory Care Plans
Peer Led Support Groups

35. Summary Support group is: Enjoyable Hard work Cost effective
Provides patients with a focus!!!
It works!!

37. Acknowledgments Dr. David Raeside Dr. David Anderson
Palliative care team
Community Respiratory Team
BLF - Alison Sweeney
Dolby Vivisol
The many speekers and volunteers who have helped over the cousre of the group