Improving access and coordination to palliative care for patients with end stage respiratory disease

The Royal Wolverhampton NHS Trust and Compton Care

Case study summary

Wolverhampton has had a monthly palliative and respiratory clinic since June 2015 which is delivered jointly by a palliative care consultant and respiratory consultant at the local hospice. The joint clinic provides coordinated respiratory and palliative care, and improves patient understanding about diagnosis and outcomes. This is achieved through joint discussion around the patient’s main symptoms and improving understanding of disease and future progression and treatment options.

As of May 2018, 36 clinics had taken place and 70 unique patients had attended the joint clinic. The majority of patients seen in the joint clinic (68.57%) had a diagnosis of Chronic Obstructive Pulmonary Disease (COPD). Of the patients seen in clinic 53% were referred to the Compton physiotherapist (with a specialist interest in cognitive behavioural therapy), 26% attended the day therapy unit at Compton and 4% attended respite.

Objectives and aims

There are about 5000 patients with COPD on the Quality and Outcomes Framework (QoF) primary care registers in Wolverhampton. We undertook a project to understand how severe this COPD population was as defined by the number of Gold Standard Framework (GSF) prognostic indicators that each of these patients had. 1232 patients had at least 1 GSF prognostic indicator (24.6% of the total COPD population). 978 patients had 1 prognostic indicator, 203 had 2, 39 had 3, 9 had 4, and 3 patients had 5 prognostic indicators.

The most common prognostic indicator was MRC 4/5 (58.4%). In the GSF prognostic guidelines it is suggested for COPD that if a patient has 2 or more prognostic indicators that they should be considered for inclusion to the palliative care register. In Wolverhampton only 15.4% of these patients were included on the register which meant a significant proportion of patients were not benefiting from the primary care palliative MDT meetings/discussions.

We measured the relative % change in patients with COPD seen by the specialist community palliative care teams between 2012/13 and 2015/16 and showed there was an increase in all contacts including day unit attendees (increased by 283%), home care visits (increased by 88%), outpatients attendances seen by the multi-disciplinary team (286% increase), admissions to in-patient hospice unit (increased from 0 to 13 in the time period) and the number of patients who died in the hospice (increased from 0 to 4).

The project highlighted that not enough appropriate patients had been referred to the palliative care teams and therefore were not benefitting from access to additional specialist and supporting services.

We wanted to make sure that patients with COPD who were approaching the end of their life were accessing the services available to them and had the right support to best manage both their condition and emotional wellbeing.


We developed a chronic respiratory MDT including palliative care, respiratory physiotherapists, community nurses/matrons, oxygen lead, hospital respiratory nurses and respiratory consultant. This helped us to develop the service through education and closer working/better communication and to ensure that appropriate patients were identified for the clinic. We also built and maintained a good relationship with the palliative care team and palliative consultant who worked in the joint clinic. We didn’t need additional funding for this clinic so no business case was needed. We used clinic data outcomes to support discussions with stakeholders.
The practical and logistical elements of the clinic were agreed at the outset: where the clinic would take place, who would be in the room for the clinic, how often it would take place, how long the appointments would be and who would provide the admin support needed. We secured community matron / nursing input into the clinic to support ongoing conversations after the clinic appointment.

Referrals are usually made via the fortnightly chronic respiratory multi-disciplinary team meeting or after discussion with the respiratory consultant or palliative care consultant. It’s important to consider referral route to the clinic. We accept referrals from secondary care only, thereby ensuring that we have maximised medical therapy and that palliative/end of life conversations have been initiated and the patient is aware if the appointment is going to be at the hospice (to avoid any shock to the patient).

The joint clinic agreed the following objectives:

  • To provide coordinated respiratory and palliative care
  • To improve patient and carer understanding about their diagnosis and prognosis
  • To improve healthcare professionals’ understanding regarding the patient’s prognosis and trajectories
  • To improve patients’ symptoms such as breathlessness, anxiety and cough
  • To signpost to other relevant support and services available
  • To identify opportunities for earlier palliative care input
  • To encourage GPs to register patients on the Gold Standard Framework
  • To provide psychological and emotional support for patients and carers
  • To support other healthcare professionals (such as community matrons and physiotherapists) delivering respiratory care
  • To improve the understanding of each other’s professional roles and organisations.
  • To provide educational opportunities for observers.


The results from IPOS (Integrated Palliative Care Outcome Scale) questionnaires pre and post clinic were compared to see whether there had been any improvement in patients’ symptoms. A paired test was conducted across responses to assess whether there was an improvement in the scores recorded. The following were the 2 indicators that showed improvements that were identified as statistically significant (p<0.05):

  • Poor mobility – Patients on average reported a 17% score improvement.
  • Feeling anxious or worried about your illness or treatment – Patients on average reported a 34% score improvement.

The improvement in anxiety scores shows that the immediate positive outcomes of the clinic are mainly related to the emotional wellbeing of patients. Physical symptoms can also be improved (as shown by “Poor mobility”) however, these might take longer to manifest.

The feedback received from patients and family members is very positive. The comments highlight that they find the joint clinic helpful, informative, a good experience, calming environment, and gave them peace of mind.

28 patients that attended the joint clinic have died (40%). Less patients in this cohort died in hospital (39.3%) compared to a previous national study (67% Elkington et al Pall Med 2005; 19:485) and more patients died at home (53.6% versus 25% nationally).

Top tips

  • It is important to establish a good working relationship with a respiratory interested palliative care healthcare professional i.e. consultant, physiotherapist and/or specialist palliative care nurse.
  • Ensure you clearly document your planned objectives from the change and collate baseline data of the local current position as this will help you show objective improvements and ability to justify your service in the future.
  • Important to include named community matron/community respiratory nurse in the clinics which will help with continuity of care and communication.

I found the clinic informative and very helpful. Staff were excellent, a very relaxed atmosphere where my partner and I felt able to give better

I am so glad we attended this clinic. I have peace of mind that my mother now can get all the help she needs. Thank you

Find out more

Contact for further information:

  • Dr Helen Ward, Respiratory and Acute Medicine Consultant,, T: 01902 307999 Ext 6469