Respiratory Futures recently talked to members of the respiratory team at Wrightington, Wigan and Leigh NHS Trust. Kim Prescot (Respiratory Specialist Nurse ILD/Asthma), Sandra Dermott (Respiratory Nurse ILD/Asthma), Heidi Prior (Advanced Nurse Practitioner - Respiratory) and Dr Abdul Ashish (Respiratory Consultant - ILD Lead) share some insight into the ways they work and the successes they've seen in their ILD service.
Can you tell us a little bit about the secondary care ILD service that is run at Wrightington, Wigan and Leigh NHS Trust?
The Wrightington, Wigan and Leigh (WWL) ILD service originally started in 2011 when Dr Abdul Ashish was appointed as the lead ILD consultant for the trust.
As you would expect the service initially catered for a modest volume of patients. However, over the last 12 years we have seen our service significantly expand with the changes in the knowledge and treatment options available for patients who have been diagnosed with an ILD.
Whilst our ILD service expanded so did our knowledge and experience of managing the complex needs of this particular group of patients. By working collaboratively with our wider WWL colleagues we have created a comprehensive secondary care ILD service that meets the current needs of the WWL ILD community.
At present our service consists of:
- Lead ILD Consultant – (Dedicated outpatient ILD clinics, monthly joint clinics Rheumatology + Palliative Care & weekly ILD MDT).
- Advanced Nurse Practitioner – (Dedicated outpatient ILD clinics, weekly MDT & inpatient ILD support).
- Respiratory Specialist Nurses – (Dedicated outpatient ILD clinics, MDT’s – Wythenshawe + consultant, drug monitoring clinics & ILD education sessions).
- Palliative Care Team – (Dedicated joint ILD + PCT clinics & inpatient ILD patient reviews).
- Oxygen Nurse – (Inpatient oxygen assessment).
- Community Respiratory Team – (Pulmonary rehabilitation, outpatient oxygen assessment & outpatient ILD patient monitoring).
- Patient Support Group – (Monthly meetings - since 2013).
What are some of the main successes so far that result from the way the delivery of your service is designed? How has the design of your service made a difference statistically to patient care?
More recently one of the things that has been brought to our attention is that access to secondary care ILD services can be a bit of a postcode lottery. Hence, our biggest success by far is having a successful secondary care ILD service that not only meets the NICE IPF quality standards, but it also meets the current needs of the WWL ILD community.
However, other key successes of our service include:
- A dedicated “ILD Hotline” (Phone & Email) – Access for all ILD patients.
- A fully operational local drug monitoring service – (Immunosuppressants & Antifibrotics).
- (Since 2018) Fortnightly joint ILD & PCT clinics.
- (Since 2013) Monthly joint Rheumatology & ILD clinics.
- Weekly Advanced Nurse Practitioner ILD clinics.
- Recruiting ILD patients into clinical trials as part of “Routine Care”.
On this, Sarah Simm & Kate Ramsden – PCT Specialist Nurses, comment;
"Supportive care aims to prevent or treat symptoms caused by a progressive disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Patients diagnosed with IPF normally have their care managed by the respiratory consultant and respiratory community nurses. Palliative care involvement is only considered when a patient is dying and their physical symptoms are uncontrolled by which point, their wishes and preferences around end of life have not been discussed or documented (Newell, et al., 2018).
In 2017, the service was initiated with a Palliative Medicine Consultant and Clinical Nurse Specialist reviewed patients in a dedicated clinic running alongside the respiratory clinic. Symptom issues were addressed guided by Integrated Palliative care Outcome Scale (IPOS) completion, hand-held fans given out to help manage breathlessness, referrals considered to the local AHP and Hospice teams. Advanced Care Planning and Preferred Place of Death is discussed and recorded.
To date, the ILD/Supportive Care Clinic has supported 145 patients and their families and currently have 55 active patients and families on our caseload.
Future aspirations for the clinic are more clinic opportunities with more appointments available and reaching more sites, and follow the patients journey into the community.
This clinic has shown that early supportive care involvement is vital to patients and their families when diagnosed with any terminal progressive disease. Symptom management and psychological support improves of quality of life. Early conversations about future planning and PPC/PPD is vital. The development of a dedicated ILD/Supportive care clinic has resulted in increased out-of-hospital deaths”.
Have there been any notable challenges in putting together your service, and how has your Trust overcome these?
The new NICE guidelines with regards to antifibrotics has undoubtedly led to the unprecedented demands that all ILD teams are currently facing. At a DGH level most ILD teams are small this will unquestionably lead to delays in patients getting referred for consideration of antifibrotics. This and our inability to prescribe antifibrotics locally is a major rate limiting step in patients getting access to antifibrotics.
We feel that the solution to this problem is to have “Prescribing” secondary care ILD services. However, as we don’t currently prescribe antifibrotics our aim has been to improve our patients journey when antifibrotics are required. One of the ways that we have done this is by establishing a close working relationship with our specialist ILD centres – (Via email & monthly MDT). This has then enabled us to successfully take back our WWL patients who have been commenced on antifibrotics.
We are hoping that this model will help improve our patients access to antifibrotics. Unfortunately, one of the challenges that we are currently facing is due to nursing resource implications ourselves and other local centres are having to cap the number of patients who they can manage on drug monitoring. The obvious solution to this problem would to be to increase the number of nursing resources within our ILD service. However, staffing shortages is a key issue for the NHS at present.
Another challenge that we faced was delays on ILD consultant appointments, which was then further exacerbated by the COVID-19 pandemic. Our solution to this problem was:
- To create an Advanced Nurse Practitioner role within the ILD team and to recruit a locum Respiratory Consultant. With the right support our Advanced Nurse Practitioner has expanded the ILD clinics capacity by having her own ILD clinic.
- More recently we have reviewed the entire ILD waiting list. This was to ensure that each patient would be allocated an appointment with the most appropriate member of the ILD team (Medical or Nursing). This process has successfully reduced the ILD consultants waiting times and further enhanced our clinic capacity.
What is some advice you would give to other hospitals who may be working on improving their ILD service delivery?
Our main piece of advice would be “Communication” is key. Being open and honest about your achievements and failures will help build a stronger ILD community. We have been working hard on strengthening our bonds with the Greater Manchester ILD community – (Monthly MDT & offering support to more junior secondary care ILD services).
Other ways to improve your ILD service:
- One of the key issues affecting the NHS is “Staffing Shortages”. We would suggest looking at upskilling and empowering the existing nursing team to provide newer models of care.
- We also feel that investing in an Advanced Nurse Practitioner will help you expand the scope of your service.
- Consider the holistic needs of the patient and address the biopsychosocial element of the patient. This can be done by incorporating symptom-based care parallel to medical model.
- Consider engaging with a patient support group as they will absolutely inspire you to push the boundaries of what your service could provide.
Tony Brierly, on behalf of the WWL ILD Support Group, says,
"The support group for Pulmonary Fibrosis has become very important. There is a great mix of HCP who attend, ILD respiratory consultants, palliative care team and charity support. There is a broad breadth of shared experiences that can be brought to support those attending and a degree of empathy and friendship that many are not aware is there until they attend. It is a brilliant way to gain access to the professionals on an informal basis and follows the trend of providing not just physical, but mental, emotional and practical support from both professional and lay people. It also allows the medical teams to get some valuable touch time and information from the patients and loved ones. Of course, we all gain friends from it too."