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

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

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

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 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

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

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 16

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 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

Role of the Breathing Space Clinic

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

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

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

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

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

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

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

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 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

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 32

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 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.

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

Thank you. @speak2matt Email me: matthew.hodson@homerton.nhs.uk Website: www.arns.co.uk