1. The Breathing Space Clinic …a multi-disciplinary, inter-organisational hospice-based clinic to support the holistic needs of patients with advanced chronic obstructive pulmonary disease (COPD)
Matthew Hodson
Nurse Consultant, Acute COPD Early Response Service (ACERS), Homerton University Foundation NHS Trust
Honorary Respiratory Nurse Consultant
St Joseph’s Hospice, Hackney

2. Aim
This presentation will outline the development and function of the Breathing Space Clinic: a hospice based clinic for patients with advance COPD 2

3. Establishing need Local policy drivers National policy drivers
Strategic Plan (2007) - St Joseph’s Hospice, Hackney
Creation ACERS (COPD) Team - Homerton University Foundation
NHS Trust (2009)
National policy drivers
End of Life Care Strategy (2008)
NICE Management of chronic obstructive pulmonary disease in adults in
primary and secondary care (2010)
COPD clinical outcomes framework (strategy) (2011)
National Change
Acknowledge tough times now and ahead
Radical changes in NHS Landscape
Nurses have come under immense spotlight
The Francis Report 3

4. The… 6 ‘R’s Recognition Role of Nurse Consultant Requirement
Relationships
Role of the Breathing Space Clinic
Re-evaluation

5. Recognition

6. National data
COPD causes more than 25,000 deaths a year in England and Wales 1
WHO data shows that death rates from diseases of the respiratory system on the UK are higher than the European Union average 1
1. Department of Health (2010)

7. Mortality rates in City & Hackney
Smoking prevalence
Risk of dying of COPD 4x greater < 75yrs cf neighbouring boroughs
Direct age standardized premature mortality rates (per 100,000 population) for COPD in adults <75 years in Hackney and the City compared to London (2005 – 2007) 1
1. NCHOD (2008) 7

8. Hackney specific… COPD 1
31% of the adult population smoke
Ethnically diverse – over 100 languages spoken
Four times as likely to die from COPD before the age of 75 years
language barriers impact of service provision in regards to access
as people living in the local authority with the lowest premature COPD death rate
1. London Health Programmes (2011) 8

9. 1. London Health Programmes (2011)

10. COPD mortality – Hackney

11. Role

12. Role Nurse Consultant Expert clinical Practice
Leadership and Consultancy
Education, training and development
Research
Service Development – in hospital / CCG
Peer support
National and European involvement

13. Conceptual Framework 1

14. My profile COPD Nurse Consultant Homerton University Hospital, London
Msc, BSc, Non medical prescriber
Manage integrated respiratory team
Currently undertaking PDoctorate Nursing
Member of ARNS / ERS / BTS
Board Member RCN London

15. Requirement

16. Palliative care needs of COPD patients
Heavy burden of symptoms 2
Symptoms at least as severe as lung cancer 2,3
Impaired quality of life and emotional well being compared to lung cancer 4
Information needs also great
- lack of awareness of progressive nature and that they may die of COPD
- fear that both of these are true 2, 5 – 8
Carers’ needs 16

17. Relationships

18. Keys to success – nurse role
Recognising that the clinic would not operate in isolation
Small steering group of interested and enthusiastic professionals (recognition to Dr Jonathan Martin and Rebecca Jennings Therapy Manager)
representing hospice and hospital specialist palliative care and local community respiratory specialist staff
Buy-in from other key personnel e.g.
championing the local need within the borough
engagement from key general practitioners / CCG
providing expert advice and specialist need
championing within my own respiratory team (consultants)
Wide-ranging consultation
including patients – through 1:1 / breathe easy group
A focus on transport/people unable to leave their homes
and replicating the service at home 18

19. Role of the Breathing Space Clinic

20. Clinic function… the aims
Primary Aims
To develop a flexible hospice-based clinic for patients with advanced non- malignant respiratory disease
Assessment, facilitation and treatment
bringing together respiratory and palliative care expertise in order to maximise the quality of life for people with respiratory conditions who may be towards the end of life
complement existing services and improve communication and joint working across pathway
to improve access to specialist palliative care
Intermediate Aim
To develop a pilot clinic for patients with advanced chronic
obstructive pulmonary disease living in the London Borough of Hackney. 20

21. Clinic function… example objectives
Holistic Assessment
Undertake a comprehensive multi-professional
assessment of physical, psychosocial, spiritual
wellbeing by
COPD Nurse Consultant
Palliative Care Consultant
Palliative Care Physiotherapist
Tailored to patients information needs i.e. not all patients will need the same level of information. 21

22. Clinic function Information
Provide access to information about both the underlying respiratory disease and the patient’s physical and emotional response to it, including issues of disease progression and prognosis
Introduce and assist with advance care planning, including documentation of CPR status
Tailored to patients information needs i.e. not all patients will need the same level of information. 22

23. Clinic function Physical Psychosocial and spiritual
optimise symptom control through non-pharmacological and pharmacological means as necessary via access to relevant disciplines internally and externally to the hospice.
complementary therapies.
Psychosocial and spiritual
introduce patients to specialist palliative care.
referral to other services including social work, benefits, psychological therapies and chaplaincy. 23

24. Clinic referral criteria (main)
Disease severity
patients will have very severe disease – FEV1 <30% predicted (NICE 2010)
Necessity
uncontrolled physical symptoms (related either directly to the COPD or to a co- morbidity) that are having a significant impact on their quality of life despite optimised medical management
three or more admissions to hospital with respiratory failure and/or infective exacerbations of their COPD in the preceding 12 months (or has required intensive home management by the for the same)
be felt to be dying within days to weeks
House keeping
medical management optimised
know that they have a diagnosis of COPD
know about, and agree to the referral
Disease severity: recognise that this does not correlate with symptoms, but a way of managing demand for the pilot phase.
Not included the GSF surprise question 24

25. Referral pathway All patients referred through the Homerton
Hospital’s respiratory medicine MDT with
palliative care representation six-weekly:
respiratory consultant review
this ensures optimal management of the patient’s
COPD prior to referral to palliative care 25

27. Metrics COPD Assessment Tool (CAT)
Provides a simple and reliable measure
of the impact of COPD on the patient’s
health status
Medical Research Council Dyspnoea
(MRC)
Visual tool for grading the degree of a
patient's breathlessness
Borg scale
VA measurement of perceived
breathlessness
Dyspnoea 12
An instrument for the quantification of
dyspnoea based on the language used
by patients
Oxygen Saturation
Baseline oxygen level
St Christopher's Index of patient
Priorities (Modified) SKIPP
A holistic index and assessment
of well being
Hospital Anxiety and Depression Score
Self assessment screening tool
for anxiety and depression

28. Re-evaluation

29. Mary… Mary is a 78 year old lady
referred to the Breathing Space Clinic by the local ACERS team
optimised Medically for a number of years
recent exacerbation requiring hospital admission discharged with home oxygen
housebound and frightened to leave the house due to breathlessness
severity of COPD: Very Severe FEV1 29 % predicted
MRC Scale: 4
Main symptoms: breathlessness on exertion, anxiety, low mood, reduced ETT
Mary’s was referred to the Breathing Space Clinic from the ACERS team

30. Examples… of Mary’s scores
HAD – no significant change in scores
SKPP – QoL
5 Pre
“felt anxious, low in mood”
3 Post (worse – but mismatch)
“I'm looking forwards to all sorts of things: to being independent,
meeting new people, having my own things around me”
Mary’s main symptoms:
breathlessness on exertion
anxiety
low mood & reduced ETT
Refractory breathlessness – no change

31. Pre and post clinic and intervention

32. Conclusion… lessons learnt
Excellent and positive feedback from patients referred to the clinic
Current metrics do not support the perceived benefits that patients are expressing as in Mary’s case
Encouraging patients to attend the local Breathe Easy group at the hospice as an exit strategy for patients to maintain links and make new friends
Inter-organisation partnership working can and does work
Clinical leadership across specialist palliative and respiratory medicine was key 32

33. Winning Nurse of the Year
For me…
Always remain patient focused
Ensure patient experience is captured
Fantastic opportunity personally
Recognition of hard work
Raise profile of respiratory nurses
Raise profile of consultant nurses
Great opportunities – like today for example!

35. Acknowledgements Rebecca Jennings Dr. Jonathan Martin
Superintendent Physiotherapist St Joseph’s Hospice, Hackney
Dr. Jonathan Martin
Consultant in Palliative Medicine St Joseph’s Hospice, Hackney
Visiting Fellow, Harris Manchester College, University of Oxford
Dr. Angshu Bhowmik
Respiratory Consultant Homerton University Hospital, Hackney
Nursing, Therapy and Administration staff from
ACERS Team and St Joseph's Hospice.

36. References 1. Fan et al. Arch Intern Med 2007
2. Habraken et al. J Pain Symptom Manage 2009
2. Gardiner et al. Respir Med 2009
3. Edmonds et al. Palliat Med 2001
4. Gore et al. Thorax 2000
5. Curtis et al. Chest 2002
6. Curtis et al. Eur Respir J 2008
7. Caress Journal of Clinical Nursing 2009
8. Gardiner et al. Palliat Med 2009
9. Bergs. Journal of Clinical Nursing 2002
10. Booth et al. Supportive and Palliative Care 2003
11. Gysels and Higginson. Supportive and Palliative Care 2009
12. Pinto et al. Resp Medicine 2007
13. Fletcher CM, Elmes PC, Fairbairn MB et al. (1959)
14. Borg, GVA. (1982). – Borg
Jones, P et al. (1999) – CAT
Fletcher, CM. (1960) – MRC
Zigmond & Snaith (1983) - HAD

37. Thank you. @speak2matt Email me: matthew.hodson@homerton.nhs.uk
Website: