Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Peter Armstrong, who is the chair of the Palliative Care Pharmacists Group. Peter, I will hand over to you to give some brief introductory remarks before questions.

Mr Peter Armstrong (Northern Ireland Palliative Care Pharmacists Group): Thank you, Chair, for giving me the opportunity to address the Committee. Thank you to the Committee as a whole for investing its time and resources in the inquiry. I am the regional lead pharmacist for palliative and end-of-life care. Today, I represent the Northern Ireland Palliative Care Pharmacists Group, of which I am the chair.

The group consists of specialist palliative care pharmacists, the majority of whom are non-medical prescribers and are embedded in the multi-professional palliative care teams in the trusts, hospices and some community areas of Northern Ireland. In some sense, we are similar to the regional medical and nursing groups, from which you have already heard and with which we work very closely. We share good practice and take a leading role in the development of regional guidance and quality improvement to benefit palliative care patients. We also have close working relationships with trust pharmacy leads, the strategic planning and performance group (SPPG) and Community Pharmacy Northern Ireland.

In Northern Ireland, our current palliative care strategy, 'Living Matters, Dying Matters', is from 2010. It recognises the role that specialist palliative care pharmacists and community pharmacies have in the care of palliative patients. Like the other representatives who have spoken to the Committee to date, we would welcome there being an updated strategy that further recognises the key role that pharmacists across all healthcare settings can play in supporting patients and carers.

The role of the hospital-based palliative care pharmacists in Northern Ireland has been evaluated, and it demonstrated a direct benefit to patients' quality of care with associated cost savings and the potential to reduce the length of stay in hospitals. Currently, while there is some specialist palliative care pharmacy input in all trusts and hospices in Northern Ireland, the number of whole-time equivalents varies greatly. For hospices, the source of funding also varies. It is a mix of departmental funding and, for some hospice posts, their own charitable funding. That brings into focus the need for people to run marathons to find funding for essential palliative services.

As a profession, we are under-represented when compared with the Northern Ireland palliative care in partnership palliative care workforce planning report for 2017 to 2024. That under-representation has a direct impact on patient care, especially at the primary/secondary care interface. In a recent study of palliative care discharges from a Northern Ireland trust, palliative care patients went home with an average of 16 medicines, with the range being three to 26. When we used a validated tool to look at the complexity of the medication, we saw that the total score was well above that of any other specialities in the published literature. You can imagine the impact that managing all those medicines has on patients and carers on top of coping with their diagnosis and the other aspects of their illness. Palliative care pharmacists in Northern Ireland have demonstrated the positive effect on managing patients' medicines on discharge and in the community, yet we do not have adequate resources to support those patients as they transition between different care settings.

Access to palliative care medicines in the community is a common theme that you have heard in previous evidence sessions. Many of you attended the event that launched the Marie Curie Daffodil Standards for community pharmacy, which was held here in March. We know that community pharmacies are the most accessible source of healthcare and are ideally placed to support patients with a terminal illness. We know the huge contribution that community pharmacists make towards good end-of-life care in their local communities. They frequently go the extra mile to ensure the very best care for their patients. Whilst the Daffodil Standards will have a positive impact on care, that is an unfunded initiative for community pharmacies and does not address some of the fundamental issues. We have fragmented supply arrangements in different areas of Northern Ireland and an overall system that is hard for healthcare professionals, never mind patients and carers, to navigate at the most challenging times, which are evenings, overnight and weekends. Only 61 community pharmacies, out of approximately 509, are funded to stock palliative care medicines, but those are only available during an individual pharmacy's opening hours, which, especially in rural areas, may not include evenings and weekends.

Only Belfast has the provision of a community pharmacy service that can be accessed overnight to supply palliative medicines. Other areas have a mix of Sunday and bank holiday pharmacy rotas, but the pharmacy may only be open for an hour or two in different towns and may not routinely keep palliative medicines. Even if a pharmacy is open, if it does not stock the medicine, then there will be a delay while it is obtained from a wholesaler. Some might only be available for next-day delivery from England, and wholesalers are not easily accessible outside core working hours. Sadly, there are often shortages of even common medicines, so you can see the challenges that we all have in navigating the system.

It is easy to think that we do palliative care well in Northern Ireland, and the question about how we rate our local services caused some discussion when the pharmacy group developed the submission. Sadly, all the pharmacists were able to tell stories about patients and carers struggling with our system. The carer of a patient in Fermanagh had to travel to Omagh to get a prescription from the out-of-hours centre over Easter, then on up to Derry to find the only palliative care community pharmacy open that would definitely stock the injectable medicines needed for urgent symptom management. A patient's family were able to get a prescription from the out-of-hours GP in Coleraine but had to travel to Antrim to wait for the medicine. When they returned home, they were told by the district nurse that they could not administer the medicine as they did not have the required paper administration chart signed by a prescriber. Again, someone had to return to the out-of-hours centre to collect that to enable the administration. Finally, a community pharmacy, open for a one-hour Sunday slot in their town for emergency medicines, was faced with a complex and urgent palliative care prescription for medicines that they did not stock. In that case, by chance, the pharmacy was part of a small chain. The pharmacist later drove to a different pharmacy in the chain, which she knew stocked the medicines, opened up the pharmacy, dispensed the medicine and delivered it to the family in her own time.

It is important to remember that the pharmacy is the last point in the chain, and, very frequently, when we have looked at the supply crises that I have mentioned, opportunities have been missed during core hours to provide those medicines. There needs to be a shift for all healthcare professionals around identifying the deteriorating patient and, then, the importance of anticipatory prescribing to ensure patients have those medicines in the home when they need them. That is the best way to prevent needing to access medicines in the evenings or weekends.

It is hard not to look at other areas and examples of different practices. In England, all community pharmacies have the funded option to stock an agreed list of palliative care medicines. I have a friend whose wife is receiving palliative care. They live in the small, mostly rural, county of Dorset in the south-west of England. Their closest town is Yeovil, with a population of 40,000 people. However, they have access to a 24/7 nurse-led palliative care helpline. Those nurses are independent prescribers who can issue prescriptions. They have electronic prescribing which can send that prescription to a community pharmacy of the patient's choice, and Yeovil has a selection of late-opening pharmacies, which are funded to stock palliative care medicines. Contrast that with our patient going from Enniskillen to Omagh to Derry, and back again.

Whilst the introduction of Encompass has seen many benefits in hospitals, hospices and general practice have only limited access, and community pharmacies have no access, which reduces their capability to ensure safe and accurate prescribing. Access to shared records, including for community pharmacies, is a recommendation from multiple UK-wide reports into accessing palliative medication. Nurses still require a piece of paper with the patient in the home to administer medicines, and, as I mentioned previously, if that is not there, urgent trips to the GP or out-of-hours centres to get the medicines written on a paper chart are required.

In Northern Ireland, there are currently no electronic options available that might enable the task to be done remotely. You will have heard previously about the role that just in case boxes have played in improving access to medicines at the end of life in the western area. However, their use is not fully embedded across Northern Ireland, and, even though they have proved to be an extremely useful tool to enable anticipatory prescribing, they are not a panacea for all medication supply issues.

More broadly, you will have heard previously about the lack of a clinical lead for palliative care in Northern Ireland, and how that is needed to provide direction and drive improvement for palliative care services across the region. I was at a recent UK and Ireland palliative medicine conference where the clinical leads for England, Scotland, Wales and the Republic of Ireland opened the conference. With Belfast being the host city for the conference, it was notable, for all attendees, that such a post is sadly lacking here.

In summary, we have some pockets of really good care in Northern Ireland, and, in common with other professions, we have an incredibly willing, knowledgeable and dedicated pharmacy workforce across our hospitals, hospices, community pharmacies and GP practice pharmacies. Pharmacists and investment in pharmacy services can definitely provide solutions to many of the issues that I raised: we feature heavily in the Hospice UK report on improving palliative care in rural communities, which was published this week. However, the best way to prevent patients having issues with accessing palliative medicines is to ensure that the medicines are in a patient's home in advance of their anticipated need. That provides reassurance for carers and greatly reduces the burden on them, freeing up time for them to spend with their loved ones. It also reduces pressure on out-of-hours services and can prevent patients from resorting to attending emergency departments (EDs) to seek symptom management and access to medicines. It compounds the difficulties that we see in EDs. More importantly, it is the wrong environment for palliative patients who wish to stay at home.

We greatly welcome the work of the Committee in dedicating its time to palliative care. Thank you for giving me the opportunity to speak to you. I am happy to answer any questions.

The Chairperson (Mr McGuigan): Thank you. As always, that was very informative. We have heard some of that stuff before, but some of it was new to us. You said that only 61 out of 509 pharmacies in the North have stocked drugs that are considered to be palliative care drugs.

Mr Armstrong: Yes. Those are the pharmacies that are funded to stock them as part of the community pharmacy palliative care network. As you probably know, community pharmacies only get paid for a medicine if they get the green HS21 prescription. In England, there is the option for pharmacies to fund them through their NHS England contract so that they can keep those medicines. Pharmacies that see a lot of palliative care will probably naturally keep those medicines, but, with the current situation in community pharmacies, they cannot keep lots of medicines that might go out of date, because they will not get funded for them.

The Chairperson (Mr McGuigan): Do you have a sense of the geographical spread of those 61 pharmacies?

Mr Armstrong: They are spread throughout Northern Ireland. There is a good spread, but patients still have to travel. Some of those pharmacies might not be open on weekends or in the evening. Sometimes it is just about getting the information out there. There is some information on nidirect on how to access them, but, if you are a carer in your own home and you suddenly have a prescription to get, there can be challenges in finding out where your local one is.

The Chairperson (Mr McGuigan): You gave an example of a family from my neck of the woods trying to get medicines on a Sunday. We have heard typical examples of that. It is an unsatisfactory situation for a family with someone at the end of their life to have to drive around hospitals, pharmacies, shops and whatever. How can we improve the situation?

Mr Armstrong: As I said, the main thing is for all healthcare professionals — GPs, community nurses and pharmacists — to recognise when a dying patient is entering the last couple of weeks of their life and having a conversation to say, "Is this a time when we need to have medicines in the patient's home?". That is a big one. You have probably heard about non-medical prescribing and the pilot in Foyle Hospice, which has been really successful at reducing the pressure on GP services. From this year, undergraduate pharmacists will come out with a prescribing qualification. The Foyle Hospice pilot was really successful. All UK-wide reports have stated that the number of non-medical prescribers should be increased. In the Foyle Hospice pilot, if the nurses in the home see a patient deteriorating, they can issue a prescription there and then. The patient then gets the medicines quickly. Those are the biggest things. Also, if a patient is in Belleek, and a family member goes to a pharmacy in Belleek, it would be beneficial for them to know that it stocks, or is funded to stock, even a small amount palliative care medicine, because that family member would have that reassurance that, anywhere they go in Northern Ireland, a pharmacy will have four, five or six core medicines for palliative and end-of-life care.

Mr McGrath: Thank you for your presentation; it gave us exactly the scenario that exists. I was thinking of using the word "shocked". I reflected on that, but it is actually more that I am saddened. The sadness comes from Saturday being my dad's thirtieth anniversary. We nursed him until his death at home. I had to do the same thing back then: I had to get into a car to drive from pharmacy to pharmacy to get the medication that was needed. It is sad that, 30 years later, we are still hearing that families are going through the same thing. At its core, is it just about money, or could systems be changed? You mentioned people's having access to those services or drugs at home. Is that not legally permitted at the minute, or is it not organised? What can we do to achieve the change that you are thinking about here?

Mr Armstrong: I suppose that it is a mix of both. There are certain legal aspects around care homes stocking palliative care medicines. They would have to have individual patients' medicines. That is a legal aspect. Again, there might be some for out-of-hours centres that mean that they cannot stock those medicines. In England, it is about applying for licences, and things like that. It is a hurdle for them. Otherwise, it is just about having that shift. The "just in case" box pilot in the Western Trust area is fully integrated now with the hospital palliative care teams, community pharmacies, GPs and community nurses. The community nurses see a patient in the community, and it is almost as though you flick a switch: something happens, we recognise that the patient is deteriorating, and we get the medicines and the paper chart that I mentioned. That actually facilitates a conversation with the family as well and provides reassurance. Even if you do not use those medicines, there are benefits there for the patient and carer from knowing that things are in place should they need them.

Mr McGrath: We have a presentation on Encompass next. Are there ways in which Encompass could help if it were developed? This morning, it was made really clear to us that the introduction of Encompass is not the full stop: it is only the beginning of the journey. Are there ways in which Encompass could be utilised so that, if somebody is on the Encompass system and has a change in their circumstances, that could be uploaded onto Encompass and would trigger the right drugs being delivered into the right area? Are there opportunities there, or is it just too complex?

Mr Armstrong: I think that there are opportunities with Encompass. Certainly, the plans to link in the hospices would be a really useful step. I brought one of the paper charts that we mentioned. You would think that it would not be too hard for a hospital practitioner, GP, non-medical prescriber or someone to prescribe something on Encompass and then a district nurse in the home be able to say, "Listen, I have given 10 mg of this medicine at this time", which is essentially what this form does, but you have patients and carers running across country to try to get a paper form when that is, sadly, needed. There are definitely solutions with Encompass.

Mrs Dillon: We know that there are blockages to this that are not financial. You have hit the nail on the head, Peter: communication and work with the hospices is essential in this because nobody understands better how that works than they, the community provision and organisations like Marie Curie that work specifically with palliative patients, do. The Department is not listening to what they are saying about changing processes. That is part of the reason why you cannot have the medications in the house. You will know that better than me, Peter. Have you any solutions to that? Can you help us to find solutions? Is it the case that, because some of it will be around governance, we just need people to sit in a room and hammer it out?

For example, a patient has to be administered medicine for breakthrough pain three times, I think, before they can get medication that will actually relieve them of their pain, but you cannot know on a Friday whether that will be administered. You will have a fair idea, and know that it will probably happen, but how do we get past that having to happen before you get it? Colin is right: that is exactly how it still happens. I have been there myself. You do not think about it when you are in the middle of it. When you look back, you think, "God almighty". I always say that we were very lucky because we are a big family and had lots of support around us, but lots of people do not have that. I spoke to a woman at the Lived Experience Forum. It was just her and one other family member. When she left her daddy, that was it. If he died, he was on his own. That is a really important element of it. Do you have any answers to that, or is it about getting people into a room to work out how the governance can be done better and how the processes can be better put in place?

Mr Armstrong: Obviously, we have a lot of messaging around reducing prescribing, especially for the sort of medicines that we are talking about — opioids and things like that. With anticipatory prescribing, we are sort of giving the opposite message.

There needs to be messaging, even at a population level, about what palliative and end-of-life care is. It needs to say, "It's OK to have these medicines in the house. It's OK to prescribe them early". The pilots of the "just in case" boxes show that the medicines are used. As I said, there is even benefit if they are not used, but there needs to be a wider message about it being acceptable to prescribe opioids in advance of patients needing them. District nurses check them every time that they are in a house. That messaging about palliative and end-of-life care is really important for not just health professionals but the whole population.

Mrs Dillon: It is about getting the balance. We absolutely do not want the overuse of medication. I am 100% an advocate for that. However, some people at end of life do not have access to medication that would relieve them of pain. That would mean that families would not have to run about. They would not have to watch the person they love in agony while, in some cases, not knowing what to do. Running around the country is one part of it. Another part is that the family may just think, "We just have to wait until the next nurse comes to see what happens here". There is definitely a piece of work that needs to be done in that regard.

The hospices and those who provide palliative and end-of-life care are vital in this conversation. The Department should not put in place any processes without engaging with them fully and really listening to their perspective.

Mrs Dodds: Thank you for the presentation. What I have taken from a lot of the presentations is that there is a lack of information for patients. You talked about patients having to drive around the country, looking for a pharmacy to dispense the drugs that they need. You can imagine the anxiety and so on of the person who is doing that. They have a loved one who is in pain. You have described a deeply troubling scenario in which people in a panic are looking for pain-relieving medicine.

Colin mentioned systems. The second issue is about information. The third is about how on earth you bring all that together. I am not sure that the health service does that very well at all. It always seems to be different in different parts of Northern Ireland. Lots of pharmacies in my area now do not open on a Sunday, not even for the one-hour dispensing period. On top of that, people have the complication of wondering, "Well, is the pharmacy that's open going to have the drugs and be able to dispense the drugs that I need?". How do people know which pharmacy is going to be able to do that, or is it about pot luck and running around to see? It is all about communication. It is the most stressful time in a family's life. It is very difficult to see that those systems are not working. I know that the main nurse may well have that information, but, sometimes, a lot of families, like my own, have dreaded the weekend coming, because they have nobody to contact. How can we improve that? What recommendations can we make to help to improve that scenario?

Mr Armstrong: You are right: it is challenging if your care is there. We rely on getting knowledge of those pharmacies out to GPs, out-of-hours centres and district nurses, but it is really challenging. We have put some information on nidirect, but you are relying on people to Google that, so it is not a perfect system.

As you may have heard, some parts of England and Wales now utilise paramedics to administer medicines. The Hospice UK report advocated using paid couriers or the likes of the people on the motorbikes who deliver bloods and things such as that to do that work and deliver those medicines. There are different options. At the minute, it is really challenging, because that sort of information is not out there. At a population level, there is not really a conversation yet about palliative and end-of-life care, and maybe it is only when people are in that situation that they start to think about it. There could be greater messaging about palliative and end-of-life care as a whole.

Mrs Dodds: We need to think about that when we finalise the report. There must be ways in which we can inform people more, because it is so difficult. It is so emotive and challenging for families. Thank you for your presentation: there are lots of things in it that will help us when we come to formulate the recommendations.

Mr Chambers: I will build on what Diane said about information. When a prescriber writes out a prescription and hands it to the family, does the family member take the prescription without realising, "I can only get this at something like 10% of the pharmacies in Northern Ireland"? Does the prescriber point that out to the family, saying, "You needn't be going down to your high street, because you may not get it there. You may have to travel"? That situation puts stress on people. I can imagine someone getting into their car, their mission being to get drugs to take pain away from their loved one, and ending up crashing into a wall or something because of the stress of trying to do that quickly.

What jumps out at me is the possibility of a dedicated website that someone could readily update at no great cost. It would contain the names, geographical details, opening hours and contact telephone numbers of the pharmacies that are funded to hold the drugs so that, rather than a family member jumping into their car and driving like a rally driver around the countryside, they could ring half a dozen numbers to ask, "Are you open? Do you have this?". That would take a lot of the stress out of it. Has a website been considered or does one already exist?

Mr Armstrong: There is definitely so much room for improvement in that area, including not just what you have talked about but a website that could be a Northern Ireland palliative care hub to link patients with GPs, out-of-hours centres and district nurses: people could go there to find that information. For the community pharmacist, wanting to supply the medicines but perhaps not having them is really challenging. It may be that they have one of three medicines, and, if they dispense one medicine, they cannot give back the prescription for the other two; you may have heard about that. A lack of patient records means that they may not know the urgency of the need for the medicine. The whole system could do with improvement, and a central website with information or a hub would be a great step towards that.

Mr Chambers: It may be unfair to the other pharmacists who make the effort to have and provide those drugs, but you said that there is one place in Belfast that is 24/7. That information has to be highlighted in flashing lights on a website with the message, "If all else fails, here is where to go". It might be easier for people to jump in the car and drive 50 or 60 miles to Belfast on that basis, with the certainty that they will be able to get the drug, than to chase round the countryside with half a hope that they might get the whole prescription or even half of it. A website is an easy solution and should be considered.

Mr Armstrong: As some reports have said, things such as funded delivery services to take off any pressure on carers to get in the car would be really helpful.

Mr Donnelly: I absolutely agree. We have heard about the same issues time and again, and they are closely aligned with what you said about the pharmacist's experience. That what Colin described from 30 years ago is still happening today is horrendous. From my background in nursing, I am familiar with your syringe driver prescription chart. The idea that we are still filling in pieces of paper in order to get drugs is absolutely crazy. Hopefully, Encompass will be rolled out to the community and make that a lot easier. The "just in case" box is a fantastic idea to improve that access.

I have a couple of questions. If I read this submission correctly, it says that the hospital pharmacist is on call for the Northern Trust area.

Mr Armstrong: In the Northern Trust, there is the community pharmacy palliative care network. The hospital has an on-call pharmacist, but they are not funded or set up to provide emergency cover or emergency medicines. Furthermore, they are based in Antrim, so it does not really help a patient in Ballycastle or somewhere such as that. You have probably heard that they provide that service, but it is out of goodwill and is not sustainable or funded.

Mr Donnelly: It states that it is an unfunded service and that responsibility falls then to the on-call pharmacist for that whole area. Given what you said about long distances, it seems to be —.

Mr Armstrong: It is about long distances and capacity. I have done it myself in central Manchester. You are in ED, looking for someone, waving about a green prescription in the middle of the night. It is terrifying for the pharmacist and probably terrifying for the carer, being in ED. It is not a good or sustainable system. We need to look at having more local arrangements.

Mr Donnelly: Why is there such disparity across the trusts? What is the best practice, and what do we need to do to bring the rest of the trusts up to best practice?

Mr Armstrong: It is challenging because of the geography of Northern Ireland. I talked about the system in Belfast with the out-of-hours pharmacist. That system works well in Belfast because of the population density. It is something that other big cities, such as Edinburgh and the Lothian area, have. However, when you go out to more rural areas, that system is not sustainable. You need an emphasis on the anticipatory prescribing that I talked about and embedding the community pharmacy into the whole healthcare team, so that the team, the family and the district nurse are all aware of that. As mentioned, it may be that getting a courier to go to Belfast is the most acceptable option resource-wise, if something is needed in an emergency.

Mr Donnelly: I absolutely get that. It sounds horrendous to send a courier to pick up stuff with a piece of paper. However, as Linda said, those are precious hours for families. They should be with their loved one and not having to shuttle about across Northern Ireland to get drugs.

That is great. Thank you very much.

Mr Robinson: Peter, in your submission, you refer to the need to include palliative care in training for undergraduate, foundation year and postgraduate pharmacists and to the lack of regular and varied training opportunities for registered pharmacists. How do we rectify that? As pharmacy services are supposed to be from the cradle to the grave, I would have thought that palliative care training, or some aspect of it, would be afforded to them. That was a bit of an eye-opener for me. Is it a UK-wide issue, or is it exclusive to Northern Ireland pharmacists?

Mr Armstrong: It is probably a UK-wide issue. At undergraduate level, we do a tiny bit on palliative care, but it really needs to be embedded at all stages. At the minute, a palliative care in partnership group is looking at education and training and hopes to bring in different tiers of education. At the lower tiers, you may be only slightly involved in palliative care and with palliative care patients; however, the idea is that you will get mandatory training. Similar to our getting mandatory fire training and such things from trusts, we would get mandatory training in palliative and end-of-life care, so that we have the basics embedded.

It is hard for community pharmacists to get away. They are, obviously, the only pharmacist there, and they need to be in their community pharmacy for it to legally operate. How do those guys get away to do their training? There is a lot of goodwill there, and they put in a lot of effort in the evenings for their training. Those are some of the obstacles.

The Chairperson (Mr McGuigan): Peter, thank you very much. That was very informative, and we really appreciate your coming before us.