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 HodsonNurse Consultant, Acute COPD Early Response Service (ACERS), Homerton

University Foundation NHS Trust

Honorary Respiratory Nurse Consultant St Joseph’s Hospice, Hackney

Aim

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

Establishing need

Local policy drivers

Strategic Plan (2007) - St Joseph’s Hospice, HackneyCreation 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 inprimary and secondary care (2010)COPD clinical outcomes framework (strategy) (2011)

National Change

Acknowledge tough times now and aheadRadical changes in NHS LandscapeNurses have come under immense spotlight The Francis Report

The… 6 ‘R’s

•Recognition •Role of Nurse Consultant •Requirement•Relationships •Role of the Breathing Space Clinic •Re-evaluation

Recognition

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)

Mortality rates in City & Hackney

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)

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

1. London Health Programmes (2011)

1. London Health Programmes (2011)

COPD mortality – Hackney

Role

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

Conceptual Framework 1

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

Requirement

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 9 - 12

Relationships

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 respiratoryspecialist 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

Role of the Breathing Space Clinic

Clinic function… the aims

Primary Aims

1. To develop a flexible hospice-based clinic for patients with advanced non-malignant respiratory disease

2. 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

1. To develop a pilot clinic for patients with advanced chronic obstructive pulmonary disease living in the London Borough of Hackney.

Clinic function… example objectives

Holistic Assessment

Undertake a comprehensive multi-professionalassessment of physical, psychosocial, spiritualwellbeing by

• COPD Nurse Consultant• Palliative Care Consultant • Palliative Care Physiotherapist

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

Clinic function

Physical

• 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.

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

Referral pathway

All patients referred through the HomertonHospital’s respiratory medicine MDT withpalliative care representation six-weekly:• respiratory consultant review• this ensures optimal management of the patient’s

COPD prior to referral to palliative care

Metrics

COPD Assessment Tool (CAT) Provides a simple and reliable measureof the impact of COPD on the patient’shealth status

Medical Research Council Dyspnoea (MRC)

Visual tool for grading the degree of apatient's breathlessness

Borg scale VA measurement of perceivedbreathlessness

Dyspnoea 12 An instrument for the quantification ofdyspnoea based on the language usedby patients

Oxygen Saturation Baseline oxygen level

St Christopher's Index of patientPriorities (Modified) SKIPP

A holistic index and assessmentof well being

Hospital Anxiety and Depression Score Self assessment screening toolfor anxiety and depression

Re-evaluation

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

Examples… of Mary’s scores

HAD – no significant change in scoresSKPP – 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

Pre and post clinic and intervention

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

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!

Acknowledgements

Rebecca JenningsSuperintendent Physiotherapist St Joseph’s Hospice, Hackney

Dr. Jonathan MartinConsultant 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.

References1. 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

15. Jones, P et al. (1999) – CAT

16. Fletcher, CM. (1960) – MRC

17. Zigmond & Snaith (1983) - HAD

Thank you.

@speak2matt

Email me: matthew.hodson@homerton.nhs.uk Website: www.arns.co.uk