Margaret Gibbs looks back at her 28 years in the job
Looking back at dates, I realise that I’ve been a palliative care pharmacist for 28 years, which is two-thirds of my working life. I was working at a local NHS Trust when Greenwich and Bexley Cottage Hospice (as it was then known – now G&B Community Hospice) opened. The Trust was approached to provide their pharmacy service and I was asked if I would like to be the visiting pharmacist. From the outset I realised this was a very different environment to the NHS. Not only were the surroundings more attractively appointed, but the staff exuded a different level of kindness, care and openness. The independence of hospices to choose a higher staff-to-patient ratio enables nursing staff to spend more time each patient and the holistic approach to care really made a huge impression on me. I saw meals served beautifully, complementary therapy offered, walls filled with artworks and sunlit rooms with carefully designed garden views. Who wouldn’t want to work in such an environment?
In 1994, there was just one resource I could use to guide me with the way drugs were being used – Peter Kaye’s A-Z Pocketbook of Symptom Control. I enjoy showing this to pharmacists new to palliative care as the slim paperback bears no resemblance to the enormous range of information available now. But looking back at it, although many drugs are no longer available, such as cisapride, Milpar and many others that have been superseded, the basics were all there and they remain relevant today. It also included some helpful sections on topics like ‘decision-making’ which really helped to set the scene. At the time, there was little research and data to back up the guidance and so much of the practice was based on experience alongside detailed patient monitoring. It is heartening to discover that as more clinical studies, research and audits are carried out, practices such as using licensed drugs off licence for other indications and giving injections subcutaneously as well as mixing them in the same syringe have been shown to be effective, beneficial and safe. Thankfully, we have dedicated colleagues who immerse themselves in specific areas of research and have brought us The Syringe Driver, which we all use to check compatibility and every few years we are the recipients of an updated version of the invaluable Palliative Care Formulary which now has its contents backed up by countless references and is complemented by its website, enabling us to discuss therapeutics with colleagues all over the world.
Eager to learn more, and with my NHS Trust manager happy to fund it, in 1995 I attended a four-day course at St Christopher’s Hospice – an introduction to palliative care with St Christopher’s staff, including Dr Tom West, as course leaders. It was an excellent grounding and boosted my confidence as I was the only pharmacist at the Trust with this interest in this field so had no-one to check things with. Soon after this, I was made aware of an organisation for palliative care pharmacists which was based at the National Pharmaceutical Association – an organisation that supports community pharmacists. I joined the then-called Hospice Pharmacists’ Association immediately and attended a conference in Stratford-upon-Avon, taking the family along for the weekend. Having a network of others to talk to was very reassuring and, as this was pre-internet, the conferences were the main arena for discussion.
Back in the 1990s, many hospices had contracts with community pharmacies to provide medicines and some clinical visits were undertaken, the cost of which was borne by the hospice. In 1995, an Executive NHS Letter was distributed that put the onus on the ‘host’ Primary Care Trust to cover the cost of hospice medicines and later pharmacy services. Currently, although many hospices have to set aside part of their global NHS funding for pharmacy costs, others have the costs paid directly by the Clinical Commissioning Group (CCG), which seems fairer. This budget was always intended to cover only the cost of symptom-control medicines so we still make a point of highlighting that high-cost medicines prescribed by specialists elsewhere should continue to be provided by them and not ordered and paid for by the hospice. This includes drugs such as antiretrovirals, macitentan for pulmonary arterial hypertension and immunotherapy. In about 2014, the Medicines and Healthcare products Regulatory Agency (MHRA) looked at the European legislation and used its interpretation to withdraw the exemption for pharmacies to supply other organisations with medicines unless they held a wholesaler dealer’s licence. Most community pharmacies and NHS Trusts did not hold this and, as a result, many gave notice to their hospices, leaving them in a very tricky situation. Fortunately, Ashtons has always had this licence, along with the required Home Office controlled drugs licences, and has been able to step in to support a growing number of hospices.
When I first reviewed hospice prescriptions, it was unusual to see general medicines on the charts. Patients were admitted mainly for terminal care and although homecare services were available, there wasn’t such a strong focus on patient preferences for their place of care and death. Studies have since shown that most people would prefer to spend their last weeks at home and the one regret I have is that we still don’t have an efficient UK-wide system for the rapid provision of end-of-life-care medicines for people at home. Some areas have cracked this but not all. Legislation, communication and the involvement of too many people have complicated the process unnecessarily. COVID-19 has been devastating but, for a short time, regulations were relaxed and we were able to put in place some measures which focussed on patient access. Unfortunately, that window seems to have closed again and meetings have recommenced.
We have progressed enormously with so many initiatives encouraging people to look at advance care planning and ceilings of care, although it’s not easy for all people and their families. There has also been a change in the complexity of the patients cared for in hospices which seems to be a result of the improvements in the treatments of cancer enabling people to live for longer with their disease and any co-morbidities. We have learned that continuing other medication can help with symptom control, for example, the excellent guidelines created by Diabetes UK have encouraged us to continue insulin for type 1 diabetics until the end of life as hyperglycaemia is such an unpleasant symptom.
After five years at Greenwich & Bexley Cottage Hospice, and while studying for a MSc in pain management, I was employed as the first pharmacist at St Christopher’s Hospice where I remained for 18 years. I had grown up in the area and we all knew of its founder Dame Cicely Saunders, who I was proud to meet and talk to on many occasions. Working in a hospice every day increased my knowledge and my colleagues were welcoming from the start. I worked with a nearby small NHS pharmacy which provided the medicines and the systems we developed worked well. I helped develop guidelines and teaching sessions for nurses and independent prescribers; wrote and reviewed policies; and, most importantly, helped tailor medicines to benefit patients while they were on the ward and as they went home. The St Christopher’s name is so well known that I began to get queries from people outside the hospice and opportunities to speak at conferences, join working parties, including NICE guidance groups, and start to arrange conferences for the evolved Hospice Pharmacists’ Association – now the Association for Hospice and Palliative Care Pharmacy – which I chaired for several years and which continues to thrive.
I imagine many of us in the hospice industry who are asked ‘what do you do?’ face a variety of responses to our answer, with many people expressing their view that is must be very sad to work in a hospice. I’ve used a taxi to get from a station to a hospice sometimes and it’s interesting to hear the drivers talk about the people they take there, their perceptions of hospices and often their memory of, and incredible gratitude for, how a hospice cared for someone they loved. As pharmacists, especially when we are not in the hospice for whole days, we don’t get much patient contact, but it’s so clear to see the kindness and respect alongside the professionalism of the nurses and doctors who care for patients and families all the time. COVID-19 has had such a devastating effect on everyone, and hospices were left out of the loop with PPE for many weeks. Once it arrived, it clearly made working safer for staff but it was distressing for them to have to care from behind masks, gloves and gowns. We have seen fewer patients on many units as visiting restrictions meant they preferred to stay at home. Hopefully now, with more access to testing, life may be able to be a little more normal on hospice wards.
This reflection has been rather indulgent but I’m really grateful to be able to look back. Ashtons has given me the chance to share my experience with more hospices and my excellent colleagues. It has been my absolute privilege to meet and work with so many outstanding individuals.