Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome everybody to Parliament Buildings this morning. My name is Philip McGuigan. I am the Chair of the Health Committee. It is great to see everybody here. I thank you for giving up your time to meet Committee members to share your experiences with us. It is important for us. We are keen and interested to hear from you today, particularly to learn about your experiences in accessing palliative care services. As you will know, the Committee has been conducting an inquiry into that. We have been holding evidence sessions since March. We have also been to visit all the hospices across the North to speak to staff, residents, patients and all those working there. That has also been helpful.

Speaking on behalf of the Committee, I say that it has been a privilege to meet and visit a wide range of professionals during the process to see first-hand the commitment and passion that everyone working in general and specialist palliative care have. We know that great work is being done, but we have also heard information that concerns us. Hopefully, as a result of our inquiry, recommendations and report, we can help to address that. The Committee has taken time, over months, to understand the issues properly. Today is so important in that process as well.

The Committee's focus today is to understand the difficulties that you have faced and are facing. We hope to also learn about some of what has gone well, so that best practice can be rolled out more widely. We want to hear about what is working well; we want to hear about the difficulties. Hopefully, as we move forward and produce a report, it will be about sharing what is working well and having that rolled out across the whole of the North. We know that there are good things happening in some parts that should happen elsewhere.

Today's event will be very informal. This is a big, formal and impressive Building, but, in this room today, we will be very informal. Please feel free to speak your mind and say what, you think, needs to be said.

Committee members Alan Robinson and Linda Dillon are here with me. We hope that Danny Donnelly and Diane Dodds will be able to join us at some point. I thank Paula from Voices4Care for assisting the Committee in arranging today's event.

I will now invite Alan Sheppard, Clare Marie Passmore and Kate McConville to share their testimonies.

Ms Kate McConville: I have chickened out. [Inaudible.]

The Chairperson (Mr McGuigan): That is OK. This is very informal, so do not put yourselves under any pressure. After we have heard your testimonies, we will have a discussion from the tables, which will be much more comfortable and easy to do. I hate public speaking. [Laughter.]

I get very nervous.

Ms McConville: I am all right about public speaking if it is work-related, but it is different when it is to do with personal things. It is a bit emotive. [Inaudible.]

The Chairperson (Mr McGuigan): People think that politicians are mad keen to get up and speak in front of a crowd, but that is not the case. I completely understand. This is very informal, and we will have good conversations at the table.

I will invite Alan to speak, if he is happy to do so. You can do it sitting there, or you can come up here and stand at the lectern: it is entirely up to you.

Mr Alan Sheppard: Thank you, Philip. I am here to give testimony on behalf of my late wife, Anne Sheppard. I wanted to start by telling you something about the person. She was a wonderful wife, mother, grandmother and loyal friend to so many people. She trained as an occupational therapist in Edinburgh in the early 70s but, thankfully, returned to Northern Ireland and worked with elderly people in care in the City Hospital and the Braid Valley Hospital in Ballymena. She worked in community care in east Belfast and Castlereagh, and most of her career was with children with physical disabilities at Fleming Fulton School in Belfast and Beechgrove School in Ballymena. She was a woman of immense talents in crafts. What she could do with her hands was incredible. She was an active member of the Women's Institute (WI). She volunteered with Active Listening and Healing on the Streets and, for a number of years, co-led a GriefShare course in Ballymena.

Before I go into what worked excellently, what worked OK and what, I feel, needs to be improved, it is important for me to describe Anne's cancer journey. Anne was diagnosed with chronic lymphocytic leukaemia in 2010 and had 12 or 13 years of watchful waiting under a really good haematologist consultant at Antrim. It was only in her last few months that she had what I was told was a cytokine storm, which necessitated blood transfusions and zoledronic infusions.

In March 2020 — it is in all our memories — came lockdown. Anne's immune system was compromised, so our lockdown was oh so strict for six months and nobody came over the door. The hospital was the one place that we wanted to avoid going to. In July 2020, however, Anne discovered a breast lump, which turned out to be cancerous. It was stage 3/grade 3 and had spread into her lymph nodes. That meant surgery, chemotherapy, radiotherapy and daily medication for two years. I emphasise that, throughout all of that, Anne was on her own. COVID meant that we could not accompany her at any time to hospital. I spent Christmas Day 2020 in the car park of Antrim hospital having left her to the emergency department ED because she had a serious infection. How she did it: what a woman of courage.

In autumn 2022, Anne developed an unproductive cough. That was initially treated as a cold, then pneumonia and then a pneumothorax. On 1 February 2023, she was sent to Antrim ED for a scan, which showed a mass on her liver. That was confirmed by a triple-phase scan a month later. There was then a series of various diagnostic scans and biopsies over the next two or three months and referral to a gastroenterologist. On 2 June 2023, we finally had confirmation of Anne's diagnosis: cancer of the liver and pancreas. It was what, I am told, is a cholangiocarcinoma. She was too weak for any chemotherapy treatment etc, except palliative care. Anne died at home on 18 July 2023 with the family beside her.

Anything that I will say now is not about individuals; it is about the system. There is lots of really good stuff out there. What went well? I would probably describe it as "excellent". The Northern Ireland Hospice specialist nurse is worth her weight in gold. Her knowledge, experience and advice were absolutely invaluable. She physically examined Anne regularly and was able to provide solutions to Anne's many and developing symptoms, including infections, as her health rapidly deteriorated. She briefed us as a family and carers on what could happen next and what to do. That helped to take much of the fear and panic out of the situations that we were to face. She directed us to much-needed practical help through Macmillan Cancer Support, such as a blue badge and attendance allowance. Her holistic approach — physical, emotional and spiritual — meant that Anne felt that she was seen and heard as a person and not just as a case. As a family, we cannot overemphasise how deeply Anne valued that.

There was then the Northern Health and Social Care Trust (NHSCT) home care team. What a wonderful team of ladies who washed and dressed Anne in her final weeks of life when she was physically too weak to look after her personal care needs. They did it with immense loving care and great dignity. They made a deep impression on Anne, and, as I later learnt from talking to some of the carers, she did the same on them.

There was then the trust community nursing team — the Waveney team. That team's daily visits to give Anne anticoagulation injections for clots in her legs were heaven-sent. We could ask those people questions and get extremely good advice and reassurance. Additionally, they provided alternative solutions when Anne became too weak to go to the toilet. They recommended a top-up mattress to prevent bedsores and a glide sheet so that Anne could be moved more easily about her bed. In the last 10 days of Anne's life, they went what I describe as above and beyond the call of duty, telling us that, if we were in any way concerned about Anne, to ring them on their personal mobile phones. They stressed that there was no such thing as a false alarm. In Anne's last week of life, district nurses called with her several times a day.

That hospice nurse, that home care team and that nursing team enabled Anne to spend her last weeks at home. I cannot say how precious that was. What quality time we had with her as a family and with her close friends with her.

Allied health professionals (AHPs) provided a bath lift and a riser recliner chair and advised us on what foods to give Anne to strengthen her.

The staff at Seven Towers general medical practice in Ballymena were all really diligent and supportive in Anne's final months of life. Her morphine tablets changed almost daily, and I said, "Can you give me a new prescription?". It was the same for referrals. After Anne's death, they looked after me.

Through the hospital diversion team, Anne received blood transfusions at a place called Rosedale in Antrim. It was a domestic setting where the transfusions were given quickly and on time. There was no long wait in crowded hospital conditions.

The Community Pharmacy staff were brilliant. They recognised the urgency of dispensing scripts, and, sometimes, they delivered the medication to our house. In a life-threatening, emergency situation, Dalriada Urgent Care acted very speedily. We had a home visit from a good GP who arranged an emergency ambulance to Antrim ED.

This bit is about Anne's care that went OK. We had emergency admissions in early 2023 for neuropathy, which is severe nerve pain, down her, I think, left side, and in June 2023 for urosepsis, which is a life-threatening condition. We are just so thankful to the Antrim ED consultants and nurses for the treatment that Anne received there.

There are parts of Anne's care and treatment that, we feel, could have been better, particularly in the area of communication. Some doctors were reluctant to engage with us on Anne's condition, citing — mistakenly, in our opinion — patient confidentiality. I held enduring power of attorney for Anne from the beginning of April 2023, but, even had I not had power of attorney, it is surely vital that the family be involved in conversations about a person's care when they are so sick and frail. Such discussions will help us to understand what is going on and what support we can give to a loved one, potentially alleviate some pressures on the NHS and help the family member to decide what is best out of all the options available to them. We recognise that there is not enough money in the NHS and never will be to provide the level of care that is needed by everyone. We recognise that, as a society, we all need to step up, but we need to understand what we can and need to do to help a loved family member who is terminally ill.

We had great difficulty in contacting the part-time hepato-biliary (HPB) specialist nurse at Antrim hospital. We had lengthy waits for infusions and transfusions at Laurel House. To us, there seemed to be no forward planning. On 8 June 2023, Anne was at Laurel House for five hours. She arrived home looking completely washed out. She went to bed, but, an hour later, we received a call from a junior doctor who told me to get Anne to the Antrim ED because her life depended on it. He would not listen to me as I explained that Anne had just been treated. We had another trip to the ED and a long wait only to be told what I already knew: it was a false alarm. The impact of that on Anne was catastrophic. The next day, she was admitted to ED as an emergency for urosepsis.

On 29 June, we were given a 9.00 am appointment for a terminally ill person whose carers and district nurses were coming in between 9.30 am and 10.30 am. That was completely unacceptable, so I renegotiated a noon appointment and was told, "Alan, it will only take one hour". Anne was the last patient to be treated in Laurel House that day, and we left after 3.00 pm.

In early May 2023 — these are all communication issues — we were told that Anne was being referred to the Northern Ireland Hospice. We were not told subsequently that it did not need to happen at that point in time. For three or four weeks, we were twiddling our thumbs wondering why the hospice was not getting in touch with us, because nothing was happening. I then asked my general practice to make a referral, which it did that morning. We could have benefited from that specialist hospice nurse's input weeks earlier.

Our suggestions for improving palliative care in Northern Ireland include ensuring that consultants have protected time to plan ahead for the care and treatment of patients. Anne's hospice nurse knew, at least 24 hours before Anne saw her consultant, what her bloods were showing and what probable treatment she needed. However, it was only when Anne was sitting in front of the consultant, with his computer screen in front of him, that he decided what treatment was necessary, and that had to be ordered from the pharmacy or from bloods. That took hours and, in our view, significantly impacted on Anne's health.

We need to have much greater use of hospital diversion teams, such as that at Rosedale, which I mentioned, or Hospital at Home for palliative care. We need improved communication between hospital staff and terminally ill patients' families. Whilst we have seen the immense pressures that staff are under, it is our view that communication is critical. Information is needed about what pain relief has been given and when and what referrals are being made and to whom, especially if changes are being made to what was originally agreed. It is our experience that communication pathways between clinicians need to be improved so that everyone has access to all patient records and is aware of a patient's wishes.

The next one is a tough point for us. The minimum treatment for any patient admitted to hospital is to control their pain. Anne was admitted to hospital in June 2023 and was told that she had already been given the maximum amount of pain relief. We understand the pressures that NHS staff were under that weekend — I think that it was a bank holiday weekend and all the doctors were in ED — but, in our opinion, any patient admitted to hospital in severe and excruciating pain should have a written pain plan in place with clear instructions for staff on what to do if things are not working. Anne was squirming about her bed. I was holding her hand, and Rachel was holding her hand. We told her, "If you need to break our fingers to alleviate your pain, go ahead".

The NHS needs to provide contextualised care. We had doctors talking about repeated tests and treatments that were never going to improve Anne's quality of life and had a very negative impact on her at the end, which, in our view, did her no favours.

The next point is about the capacity of the Macmillan Unit for palliative care at Antrim Area Hospital. Before 12 July, the waiting list was three; after that, it was nine. Anne was offered a place there on 17 July, which was the day before she died, but she was too weak to be moved even by an emergency ambulance.

I worked in the health service a number of years ago, and I am aware of the process for the funding of hospices. The public purse provides about 25%, and they very much depend on us, as members of the public, for the 75%. I understand that the lack of funds has meant that some beds have been mothballed.

We met the trust; we met the senior management, and I have written to them. I know that business cases have been with the Department since 2022 to improve the cancer clinical nurse specialist workforce. Whilst some temporary funding has been provided for the most vulnerable posts, a decision is still awaited from the Department and the Minister. If you can help with that, please, please do. Those are key posts for staff in the hospital and for people who are supporting their family members.

I have just a few closing comments. I really appreciate your bearing with me. I know that I may have spoken for too long.

The big picture is that, each year, around 4,500 people in Northern Ireland die with or of cancer. That is about one in four of deaths in Northern Ireland each year. There will be other people with life-limiting conditions who will need palliative care as well. The small picture — our experience — is that, if you tick all the boxes for a particular illness, such as breast cancer, the patient's journey is very smooth. However, if you do not tick particular boxes, that journey is much more challenging, and we felt that no one really wanted to take responsibility for Anne's case. It was complex; it was multifaceted. Yes, we know that the outcome would never have changed in her case, but the journey could have been much more straightforward.

I hope that you will agree that our society is judged by how it treats its most vulnerable. When I worked in health and social services, the strapline — our motto about why we existed — was "Adding years to life and life to years". We as a family are so thankful for all the help and support that we received. We do not know how we would have coped without it. It gave us precious, quality time to spend with Anne as her health rapidly deteriorated. Sometimes weeks, even days, are as important as years.

Thank you for listening to me and the testimony about a truly extraordinary, beautiful lady — my wife, Anne. We loved her, and we miss her loads. Thank you.

The Chairperson (Mr McGuigan): Thank you very much, Alan. That was very powerful. [Inaudible.]

It was wonderful to hear, and it is so important for us to hear about personal aspects of the people whom we are talking about. We are dealing with systems, but the systems are not producing the outcomes for people. That is why we wanted to hear the testimony today. I understand that it will be hard for people to tell the stories of their loved ones, but we appreciate your taking the time to do it.

Our next person is Clare. Thank you, Clare.

Ms Clare Marie Passmore: Thanks, Philip. Thank you, Alan. That was just wonderful, particularly where you stressed all the positive and all the great memories. Please bear with me while I read this, because I want to make sure that I get things across to you.

My mum and dad, Jim and Clare McVeigh, died within six months of each other in 2020, during the first eight months of the pandemic. Their combined age was 180, and they were in the sixty-fifth year of their marriage. The last five years of their lives were marked by deteriorating health problems. Both had multiple challenges, and both experienced an accelerated entry into end-of-life care. Our relationships with them had changed from being cared for to being the carer.

Following a couple of ED attendances and out-of-hours paramedic visits in early March 2020, Daddy reluctantly realised that he needed to accept palliative care. Daddy was not prescribed palliative care, nor was he moved into palliative care, but we had a chat with him, and he accepted that.

Despite his wishes and everyone's efforts to have him at home, he spent the last six weeks of life as a hospice inpatient at Somerton Road. He made a bit of a recovery two weeks in, but, again, despite everyone's best efforts, he was unable to return to the care of the amazing district and community specialist palliative care nurses, because essential social care could not be joined up before he started to decline further. Daddy was blessed with a peaceful passing and, unlike many others at the time, with his children supporting his care.

Daddy died with various bits and pieces of tubes; he had a laryngectomy. We were able to go into the Northern Ireland Hospice to provide care for him. The Children's Hospice could look after trachies, but the adult care people were different. We were in a privileged position. My two sisters and I had a 24-hour rota. We were there, and they were there at the end. Daddy's end-of-life story was published in the 'Belfast Telegraph' and the 'Sunday Life' in November 2022, so, if you are interested, you can find out a bit more about his history there.

As a result of that, I was invited to be our voice in the development of the Belfast community palliative care hub, where our representation has been very much appreciated and listened to. I am so pleased that the hub has had its soft launch; it has not had its big formal launch yet. It is absolutely wonderful. The hub brings together Marie Curie, the Northern Ireland Hospice and the Belfast Trust to attempt to make the best possible palliative care available for people in Belfast.

In our palliative and older care forums, I am very conscious of those who do not have family carers and who struggle and often die alone. Inequity in access to and delivery of care, especially social care, is a challenge that very many people face. My mum's final days were very difficult for her and my siblings. Mum died from a broken heart, being isolated and unable to be with Daddy through his last weeks — the power of lockdown. From June 2020, Mum received amazing care from the Belfast Hospital at Home team, which is incredible, as you mentioned. She received amazing care from that team a couple of times. However, in late September 2020, she was referred by the team via ED for inpatient treatment for heart failure and kidney concerns. Classically, she was released on a Friday evening. Mum's condition deteriorated badly over the weekend, and she was readmitted to the ED on Monday morning and sent home that evening with no change in treatment. Mum appeared to move very quickly and abruptly from active treatment to apparent "Do not treat" status. It is very painful for me, because I took a couple of weeks' respite with my husband, who had been seriously ill the year before as well, and I was not there during that. At that stage, her GP apologised, and the palliative pathway followed. Unlike Dad, however, Mum died at home — the home that they shared for those 65 years — with good community, social and palliative care.

I feel that, with both Mum and Dad, poor communication and understanding of their final transition to the last days of life meant that there was undue anxiety for both them and us. I am a staunch proponent of advanced care planning. I appreciate that that is a difficult conversation, but, when properly communicated, it will mean that folks can have their decisions about ending treatment supported, a peaceful, natural death realised and crises avoided. While Dad was safe and well cared for in the hospice, initially, it was unable to accommodate him, with demand very much outweighing supply, as we heard. We were also aware of the cost of providing that care, which is paid for through voluntary donations. I reckoned that his six weeks cost about £30,000. At that time, we were in lockdown, so there were no donations. We raised £4,000 in a run/cycle challenge that even my mum participated in on her Zimmer frame. However, that sum would not make a big dent in the need. While most would like to leave this world in the comfort of their own home, that is not always an option due to complexities such as those in my dad's case. Why is access to inpatient end-of-life care a lottery? The care is in short supply, there is an inequity and it depends, as someone said to me, on cake sales.

I am grateful to have been given this opportunity to briefly share the end-of-life care experience of two amazing people. I would have loved to ensure that it was better. However, theirs was better than that of many. A lot has been learnt from my life experience, but, in a nutshell, I would like to see more equitable access to inpatient end-of-life care that is not dependent on voluntary funding. There should be a joined-up provision of services between health and social care providers, including our charitably funded hospice services. There should be no gaps, duplication or confusion. There should be early, prompt diagnosis and an awareness of the fact that life is ending and of end-of-life needs. There should be clear identification of the key worker. Alan mentioned that his key worker gave him access to their phone number, but my siblings in Australia phoned me to ask who was managing the patient. We had a long list of people to contact but did not know who the key worker was. Finally, there should be an adoption of advanced care planning to ensure that everyone can inform people of their wishes in a timely manner and smoothly transfer into the end stage of life.

Thanks for listening. I came to share that briefly with you because of the work that the hub is doing. The hub listened to our voices, and, by sharing our voices, we hope that we will be heard and care will be improved. Thank you.

The Chairperson (Mr McGuigan): Thank you, Clare. Good luck with the work of the hub. Thank you for sharing your parents' story. We appreciate that.

Ms Linda Cooper: Thanks very much for giving me the opportunity to talk about my father, Paddy Kelly.

Let me tell you a wee bit about him. My daddy was born in 1937, and he was 85 when he passed away. He was one good-looking guy. He met and married Mum in 1962. She died in 1979, and he raised seven daughters single-handedly, which is some going, let me tell you. He spent his whole life surrounded by women. He went to the Derry dances in his youth, and he loved to jive. He played snooker, and his nickname was "Cautious Kelly", because he could make a snooker match last for ever. He was in Derry when Dana won the Eurovision Song Contest. He met Bill Clinton in 1995 when he visited Derry, and he wrote a poem about him that was published in the local papers. He loved his garden: roses were his favourite. He was a DIY fanatic and lived by the motto, "If it moves and it shouldn't, use duct tape. If it should move and it doesn't, use WD-40". He believed that Sudocrem was an all-round cure for everything. He was a great storyteller. He loved a good laugh. He dressed up at Halloween, Christmas and for parties. He had an encyclopaedic memory, and he was always up to date with current affairs. He was grumpy sometimes, but who is not? He was our dad, and we loved him. In his last days, he was in extreme pain, and he asked to die. Every pain, scream and tear that was shed tore through our hearts and souls, and we will never forget that. We and the GP promised him that he would not be in pain. We failed him, and the system failed us.

Let me tell you a wee bit about that journey. In 1948, the NHS was created by Aneurin Bevan to meet the needs of everyone, free at the point of delivery and on the basis of clinical need and not the ability to pay. Winston Churchill coined the phrase "from the cradle to the grave". We all put our trust in the NHS's systems and believe that, when our time comes, we will be cared for and have a pain-free and dignified death. When I started to train as a nurse, which was a wee while back now, the one thing that struck me over the years was that we had a duty to provide care to all our patients and to aid their recovery. When that was no longer possible, we had a duty to assist them towards a dignified and pain-free death.

That was something that I worked towards my whole life.

In Northern Ireland, dying and death are taboo subjects. None of us wants to think about our mortality, fragility and inevitable death. However, none of us can escape it. Therefore, the first experience that many of us have of palliative and end-of-life care is when we are at the centre of it, and it is often found lacking and not what we expect. Even as a healthcare professional, my understanding of palliative and end-of-life care was lacking. I thought that they were one and the same, but they are not.

My understanding now is that palliative care is there to provide care to the patient whose condition is no longer treatable. It aims to treat the symptoms and to provide support for family and friends whilst they come to terms with the realisation of the patient's condition. It also allows the patient to live their life to the fullest, taking into account the restrictions that they have and providing them with physical, spiritual and emotional support.

End-of-life care is just that: providing care and support for the patient and their family as the end draws close. That includes the provision of physical care, such as washing, feeding and administering medication. Most important, it also includes pain management, which can be a fine balance between controlling pain and allowing the patient to spend their last days with their loved ones in a meaningful manner. We understood that only when my daddy was in the middle of it.

Dad had been ill for many years with various health conditions. He had heart failure following a heart attack 20 years previously. In the last years of his life, his condition slowly deteriorated. He lost weight, he had poor appetite, his mobility decreased and he experienced what he thought were side effects from his medication. With hindsight, however, I realise that he was displaying all the symptoms of chronic heart failure, and his medication became less and less effective. Through all that, his mind remained very sharp, and he held out hope that the medication could eventually be changed to control the symptoms, because he wanted to live till he was 100.

In May 2022, he was hospitalised again with distressing symptoms of vertigo and breathlessness. Following investigation, his consultant explained to my dad that he could do nothing else to control his symptoms and that he was moving towards the end of his life. We all wanted Dad to come home, so he was sent home. Unfortunately, that happened to be the weekend of the Queen's jubilee, which was a long bank holiday weekend. Everybody who has talked to you today has talked about the lack of cover at weekends, and we experienced exactly the same thing. That weekend, due to the exceptional circumstances, no Marie Curie nurse was available.

That night, Dad was again in acute pain. The on-call GP said that he would come to the house to administer pain relief. As Dad was in acute pain and we had been told that the GP would come out, we assumed that that would happen as soon as possible. The GP arrived two hours later, after another phone call from us. He was carrying out home visits for other patients as well as looking after palliative and end-of-life patients. His call sheet noted that Dad's call was urgent, and "2 hours" was written in the comments box beside Dad's name. Although it was an urgent call, the GP was given a two-hour window in which to see him. We were not aware of that. All that time, Dad was in acute pain.

The nurses who cared for Dad in his final days were caring and compassionate, but it was very evident that they were stressed because they could not deliver the care that they knew that he needed. The palliative and end-of-life care strategy Living Matters, Dying Matters talks about a "holistic approach" to individualised care, but that is impossible to deliver when you have to travel up to 30 miles between patients to deliver basic care. There is little time to give emotional support to the patient and their family when your next patient is waiting for you and is possibly in pain.

On Sunday 5 June, it was finally decided that Dad needed to have a syringe driver for pain relief. The drugs protocol stated that the patient had to receive morphine three times in 24 hours before a syringe driver would be considered. Whilst I understand the reasons for protocols, that protocol was rigid and was not flexible to the needs of the patient, who was our dad. It was obvious from early on that he would require a syringe driver at some stage; however, not all the drugs that were required were in the house. On the very day that Dad died, therefore, we were away — again, for two hours — to get his medication. His syringe driver was erected at 1.00 pm, and he died at 3.15 pm that same day.

None of the services or, indeed, staff started with the intention of causing obstructions or delays, but the system has been set up in such a way that means that they are inevitable. None of the staff members or services that we encountered, although professional, kind and compassionate, realised how their role was key in delivering the care that my dad needed. There was no real sense of there being a joined-up approach. They were just different cogs, all doing their thing but not really engaging.

There are national strategies for maternity care, cancer care and mental health. Most of us will never have to access them. However, the one service that we will all be exposed to in one way or another is palliative or end-of-life care, which does not have a current strategy. A strategy was put in place and reviewed, but it needs to be reviewed again. To ensure that services are delivered when and where they are needed, strategies need to be live. They need to be reviewed regularly to ensure that they are still relevant. There is a great urgency for a new strategy for palliative and end-of-life care, considering the post-COVID world, where new challenges and gaps in the current services have been identified. The strategy still needs to be created with input from service users to ensure that it delivers where the patient needs it. Its focus needs to be on working together for a common purpose.

We, as a family, made some suggestions, and some came from my background in nursing. Those include the fact that change does not have to be big and that small changes can have a huge impact. Nursing staff should have direct contact with GPs. The palliative care nursing staff had to ring a centralised number, wait for the GP to get that message and the GP would then ring them back. There should be a direct line. We have done some work with the Western Health and Social Care Trust, and I know that direct line contacts are now available for the nursing staff. It cuts out a part of the process that does not need to be there.

Another suggestion is nurse prescribing. Why can nurses not prescribe certain medications? They can prescribe them in hospital situations, so why can they not do that out in the community? The nurses have the same qualifications and are experienced, so why can they not do that? I know that there are protocols etc for that, but it needs to be pushed forward quickly.

While there is a prescription delivery service, there is nothing for urgent prescriptions. You could wait for a day, two days or whatever. I will mention electronic prescribing. We all use laptops and PCs — I can see them in the room — so why can we not do electronic prescribing? What is all the paper about? You have to collect a prescription and take it here, there and everywhere.

There should be a telephone tree or an online medication stock-availability system. We went to various pharmacies on one day alone to try to get the prescriptions that my daddy needed. Nobody had everything that he needed. Once I had taken a prescription to one pharmacy, they would not let me take that prescription to another. Nobody ever offered to phone to check whether Boots had it. Nobody did that. We had to run around half of the town while Dad was in pain. What about a telephone directory? In other words, somebody could say, "I will ring that pharmacy, so you can go there directly." There should be a central fully stocked pharmacy that is open 24/7, possibly located in a healthcare facility, for those urgent medications.

We support adequate staffing that is based on workload and clinical priorities. An older population means that more and more people require palliative or end-of-life care. There should be robust and flexible drug protocols. As I said, Dad had to have morphine three times in 24 hours before they would even consider a syringe driver. In that time, he had lots of breakthrough pain. You need to be flexible, because there are different circumstances.

We need to raise awareness in the public of palliative and end-of-life care and of how they can be part of it. As a family, we did not realise that you can be in palliative care from the day and hour that you are diagnosed with a condition. It is there to provide you with support to live your life as you are. It is not end-of-life care, but the public do not know that. We as a family did not know it, and I know that the public do not know it. Palliative care can be instigated at any stage.

Given what I have told you about Dad being in pain in his last hours, I ask you to try to imagine that he was your loved one and to please not let anybody else suffer unnecessarily. Thank you very much for your time.

The Chairperson (Mr McGuigan): Thank you, Linda. Paddy sounds like a wonderful man, although I do not know whether I could have played snooker against him.

Ms Cooper: No, definitely not.

The Chairperson (Mr McGuigan): He sounds like Steve Davis. I was more a Jimmy White-type player. Obviously, we all agree that Sudocrem is the cure for everything: who does not agree with that?

Lastly, we have Austin.

Mr Austin McCracken: Thank you, Mr Chairman. Ladies and gentlemen, I did not come prepared to share my testimony, but, fortunately, I have a testimony. Once I

, I started to rewrite my testimony. First, I am a specialist Irish art dealer and have been for the past 35 years. My late wife was a nursing sister on a cancer ward. She suffered — no, not "suffered": she had Alzheimer's for 14 years. From the day that she was diagnosed to the day that she died, she was never in a nursing home. She never had a urinary tract infection or a bedsore. I had the joy, pleasure and privilege of caring for her. That was rather special to me.

I want to give you a fourth "p", which, I think, is the key to caring: having a positive mental attitude. From the day that she was diagnosed, I took on board the responsibility for her care by communicating with the various consultants, doctors and the hospice. She was never in hospital.

The other exciting thing is that I discovered a wonderful mantra for caring. I have a friend who is an A&E consultant. We are very close, and I discovered that NHS is the key to being a good carer — nutrition, hygiene and stimulation. With "nutrition", you must be fussy about what you eat. With "hygiene", you must be meticulous: 90% of infection comes through the mouth. Ciaran said to me, "The last thing that you should do before you touch Elsie is wash your hands". That is what I did. The third thing in NHS is "stimulation". I made a positive point of getting her out of bed every day until the day that she died in my arms. She was even out of bed on that day. For the last three years, when she was in a wheelchair, I had the joy of monitoring how people treat those who are in a wheelchair. I found that they talk to the person pushing rather than to the person in the wheelchair.

I now volunteer for Belfast hospitality providers. I talk to cruise ship passengers who are coming back to the ship and get their feedback, so I ask them what was good about Belfast and what was bad. When I see a person in a wheelchair, I make a dive for them and talk to that person. They are just so pleased.

Ladies and gentlemen, I encourage you in your world of caring. Use the NHS. Thank you.

The Chairperson (Mr McGuigan): Thank you very much, Austin, for your testimony and words about your wife, Elsie.

We are now going to go into discussion. We will have about 25 minutes of discussion. We have heard a lot. To be honest, there was an awful lot of detail, so we can have a just bit of an informal discussion. There may be something else that you want to say. Obviously, MLAs should ask questions, and we will try to tease out any more information that will help us. Then we will break for lunch at about 12.50 pm. So, just at your own tables — [Inaudible.]

The Chairperson (Mr McGuigan): OK. I apologise. You would think I would know how we are proceeding. This is why our public services are crumbling. I apologise. I just do not know what is happening. [Laughter.]

Sorry. [Inaudible.]

With the small number of people that we have, we can open up a discussion. Maybe we can turn our chairs so that we are looking at one another.

I will start. Everybody talked about communication being a problem, and, obviously, it is very important for the families and loved ones of those who are at the end of life that they do not waste time trying to seek information and getting the right person to speak to. I am keen to hear how you think the system could be improved. We know that we need improvement in the flow of information. How, in practical terms, do you think that we could do that?

Ms Cooper: I work in the health service, so I see this every day. Our medics should be trained, at their training stage, to know that communication is required and that they should not be afraid to ask those difficult questions or tell patients about what they need to know.

As nurses, we need to have better communication in our skills in how we approach patients. Somebody here today — I think it that was Linda — mentioned that somebody who was giving a diagnosis would beat around the bush and never once say the words, "You have cancer. You have a tumour", until they were asked face to face.

Education is key as well. I am not talking about what is already in place; I am talking about going back to the day when people are coming in to train. Palliative care should be part of that training, without a doubt. Trainees should be able to hear testimonies from people who have been through similar circumstances in order to help them build up the compassionate personality that they need to have to do that job correctly.

The Chairperson (Mr McGuigan): OK, thank you. [Inaudible.]

Does anybody else want to talk specifically on that point about communication?

Ms Sharon Stewart: My husband, Stevie, had head and neck cancer and a tumour in his cheek. Whilst he was in treatment, it was amazing. I could not fault the quality of care. We had a Macmillan nurse who coordinated everything and kept all those plates spinning, and she communicated with all the agencies and service providers that he had to engage with. As soon as we were told that they could not treat him any longer, there was nothing. We left that room with the worst news but no appointment, no name and nobody to talk to. Our Macmillan nurse said, "Thank you, I have enjoyed working with you. I hope that it goes well." However, there was nothing.

We sat in the car park and cried. Our ticket ran out, and we had to buy another one. We eventually met great people, but, at that moment, when we needed it most, there was no name to cling to and no time at which we could talk to somebody. That was cruel: it was very cruel. We met wonderful people throughout palliative care, but nobody was coordinating it, so we lost that. I had to keep all the plates spinning then, and I did not. I made so many mistakes. I was broken by that. Having someone — a key worker or a link worker — is essential to keeping care going.

Pain relief has come up again and again. It is frightening how often the same things are being said, yet they are not changing. Stevie had to go into to hospital to have an infection treated with intravenous antibiotics. No matter how much I said to the nurses and doctors that there had to be an incremental approach taken to his pain relief, they walloped the dose up. He ended up being like a zombie. He had no quality of life in there. To get him back to where he could have that quality of life, we went to the hospice and had to have the dose reduced. There was a huge amount of pain involved to get the level of pain relief back up again. The transition from the hospice to being back at home was a nightmare. When he got home, his script was a thousandth of what he needed. That was at a weekend. We are back to the same conversation about what happens at the weekend. It took until the Wednesday until it was discovered that that error had been made. He then had to endure another week of pain to get the pain relief regulated. If we are still talking about communication, support and pain relief, that needs to be addressed.

Sorry. I did not mean to get so emotional, but it was frightening for me today. Stevie died five years ago, and we are talking about the exact same issues today. I have been fortunate enough to work with the palliative care team's improvement service. That team is making changes, but I do not know whether those changes are happening. I would like to hear more about that, following on from the talk, five years ago, about having collated information. I had not heard of a hospital diversion nurse until I was in the position of having to ask, "Who can help me?". I heard about that only by accident. Somebody, somewhere, knew. Hopefully, the situation is better now. Hopefully, it has improved. [Inaudible.]

The Chairperson (Mr McGuigan): The key point of what we are doing is to see those improvements made and improved on.

is good somewhere else and is good everywhere so that everybody has equal access to treatment.

Apologies. I should have said at the start that everything that is being said here is being recorded by Hansard. This forum is important to us. We are using a microphone, as it makes it easier for Hansard to record everything.

Mr Robinson: When speaking about his dear wife, Alan referred to waits. Alan, you said that you had long waits in Laurel House and that there was a waiting list for the Macmillan unit in Antrim. I am keen to hear about others' experience of hospice care. Did others here have similar waits? If so, how did that affect them and how did it affect the welfare of the patient?

Ms Tammy Snodden: I know that there is a big gap in respite services for children going into hospice care. My daughter passed away 24 years ago. I know that things have progressed since then, but I still do not see massive progression. The new Encompass system in the trust is supposed to be able to draw together professionals' opinions and diagnoses. Everything is supposed to be on one screen, but it is not. Things about the patient are not being highlighted so that another professional can deal with them, yet the whole idea of that system was that everything about a patient would be mapped out and highlighted. Pain relief was supposed to be passed on quicker, and palliative care pathways were supposed to be smoother.

I, unfortunately, had years of experience of that with my daughter. We have a genetic condition. I have also seen my niece go through palliative care. My sister died of cancer. The system has not changed very much in the 24 years that I have experience of it. I work in the health service. There are frustrations at a nursing level because consultants are not updating the system to pass on the information. We have to try to pull together information about patients. We are spending more time in front of a computer than we are caring for our patients.

The Chairperson (Mr McGuigan): That is important. Does anybody want to come back on anything?

Ms Passmore: I will follow up on Alan's point about delays. There are two issues with communication. The first is with the systems involved. Hopefully, our sparkling new Encompass system will address some of the issues. The other is with personal communication. Something that I am keen to see happen is, when somebody is referred, that that is flagged on the system and that there is person-to-person communication so that there is a backup method that can be measured. I do not know whether I always blame the pandemic for this, but, in Dad's case, it took a while after making the phone call before we found the route through his cancer services to palliative care services. That triggered the Northern Ireland Hospice. In the meantime, he had another incident. The paramedic said, "Would you think about referring him to palliative care?". I said, "Yeah, we did that, and we're still waiting". One of the big challenges is capacity. As I tried to say, the big challenge that we have is the fact that 75% of the palliative care inpatient beds are funded by voluntary contributions. That is a big issue that causes delay. Part of the delay in Dad's case was caused by there not being an appropriate bed available for him at the time.

Ms McConville: My father was transferred from the regional cancer centre back into the community without a handover or any kind of referral. For two weeks after he was told that he had weeks left to live, he self-medicated with ibuprofen and paracetamol when he should have been on Longtec morphine. When Macmillan staff eventually called out to see him, they were astounded that he had been left with no transfer of care. We never received the service that we should have done, because my parents lived in a rural area. Macmillan staff called out twice and then never visited again. We had only telephone support after that, which was daily, to check on his medication.

We were never assigned a key worker. We were never told that there was a key worker. I had to communicate daily with GPs, allied healthcare professionals and the Macmillan nurse, despite my not really knowing who was responsible for what or how things happened. The community pharmacists did their best, but they were not perfect. On weekends, or after 5.00 pm, they could not provide the service that we needed, when we needed it. I was told that here was a twilight service for pain management between 5.00 pm and 7.00 am. One particular evening, when my dad was screaming in pain, I rang the twilight service, only to find that nobody would answer. For two hours, we were left with nothing. I had to make decisions about breakthrough medication that I, as a layperson with no medical training, should not have had to make. I was reassured that I had made the right decisions, but I could have made the wrong ones, which would have resulted in the death of my father. The service needs to be better. The service needs to do better generally. That is not specific to the Southern Trust but across Northern Ireland. We are not learning any lessons, and it is clear from what other people have said today that we have all had similar experiences, which means that the situation is continuing. That was in 2022, so it has to be better.

The Chairperson (Mr McGuigan): Thank you, Kate. I was going to ask you what trust area you were in, but you said.

I was going to ask next about rurality and the differences in rural and urban areas. You have clearly identified some of those issues as well.

Mrs Dillon: Unfortunately, from what you said, even though I had not asked you where you were from, I could have told you that it was the Southern Trust area, because I had exactly the same experience. My question is about who does what. What does Macmillan do? The Southern Trust has Macmillan, district nurses, the twilight service and the Marie Curie nurse. Nobody in my family, including me, knew who did what. I want to get a sense of whether that has been the general experience, where people are not being told who does what. I am not sure that even those professionals know among themselves who does what. If one accidentally rings the twilight service, will you be told, "Actually, it is Marie Curie right now" or "It is the district nurse tomorrow"? You are right to say that there is not always a timely response. As I said, I just want to get a sense of whether that has been the experience across the piece or whether it is Southern Trust-specific.

Mr A Sheppard: That was our experience. I worked in the health service at a senior level, so I had some understanding. Fortuitously, however, we chose to use our hospice nurse as the key worker, and she was excellent. She told us whom to go to and what to do. If we had not had her, we would have been pulled from pillar to post.

Ms Rachel Sheppard: It was about funding and finance. [Inaudible.]

Mr A Sheppard: Yes. Even though I had a bit of knowledge, I struggled big time. It was by accident, because I know that other people who perhaps have not used their hospice nurse as the "key worker" do not know what to do.

Mrs Dillon: I should have had said that I am an MLA, so I am here to ask you questions. I just wanted to make the point that, even in my position, I was not aware of who did what. If people have family members who can represent them, that is great, but what about the people who do not?

The Chairperson (Mr McGuigan): In our evidence sessions, we heard from a senior consultant who told us that, even with his experience in the health service, he struggled to navigate the system. It is therefore a big problem. If people like you, as well as senior consultants, MLAs and other elected reps are finding it difficult, you can imagine how difficult it is for other people.

Ms Cooper: If palliative care is done correctly and begins at the start of the journey, patients and their families will get what they need to support them, as well as follow-up support. Families are grieving. I have heard people talk about their experiences from 10 or 20 years ago, and they are still grieving about what they went through. If palliative care is done correctly, it reduces patient admissions to hospital. We already know that hospitals are under pressure. EDs are under extreme pressure. Somebody who is receiving end-of-life care should not be sitting, in pain, for six to 12 hours waiting to be seen because nobody can give them their pain relief. If palliative care is provided in the right place and at the right time, those patients will not end up in A&E. It is well documented that the instances of patients going to A&E and being admitted to hospital in the final months of their life is elevated. That is not the place where they need to be.

Ms Snodden: There needs to be more communication with families. One gentleman whom I looked after in the community died about six weeks ago. The family were told that he was on a palliative care pathway only 24 hours before he died.

The family was not given the choice to bring him home. Control was not given to the family. I understand that, in certain circumstances and in certain cases, that cannot be given to the family, but families should at least be informed. The issue of communication keeps coming up again and again for palliative care.

Ms Cooper: For palliative care,

advance care planning to know what the patient wants and the family wants. If those conversations are had up front, there is no fuddle when that patient loses consciousness. There is no need to ask, "Do they want this? Do they want that? Do they want something else?". Not everybody can have those conversations up front, however, so people have to be trained to be able to ask the right questions in order to make sure that the family understands what you are saying. People need to be able to speak at the family's level. That is all to do with education. Education is key to everything that we are talking about.

Ms Passmore: I have already said how strongly I believe in advance care planning, and it has to start before palliative care. It is not just a conversation to be had among the patient, the carer and the clinician, however, because it is going to be a difficult conversation. I did that a bit with my mother and my sister sitting in my car, saying, "Right, Mum, what do you want to happen?". She was already down the road. The conversation about advance care planning that had started in Northern Ireland seems to have ground to a halt. The conversation will not be about just health matters. So many other things are involved: healthcare, social care and civic community care. The conversation is going to be difficult, and we all have to be there to make sure that nobody is left behind and that the wishes of the individual are followed.

Ms Cooper: Advance care planning is about making people understand that when they enter palliative care, that is not them knocking on heaven's door. There could be a long life in front of them before they get to that stage.

I am a member of Voices4Care. We published a book coming up to Christmas last year called 'Positively Palliative: Stories of Care, Loss and Love', in which people talk about how they have lived with palliative care and had long lives. There are also stories from people who had poor experiences of end-of-life care, however. It is therefore about making the public aware, because as soon as somebody says, "You are on palliative care", people are choosing songs for their funeral and picking out their coffin, when that is not what they should be doing.

Mr A Sheppard: There is one area that we have not covered, but it is a positive, and I feel that I need to raise it: it is the help that is provided in the community. My wife, as I said, was in the WI. She was in a coffee group of ladies, and a number of times there was a rap on our door, and our front step was like an altar, with food parcels and meals left on it. When you do not know what you are doing, it is great that you do not have to think, "What am I going to cook tonight?".

Some of Anne's people who trained with her in Edinburgh were based all over the UK, and they flew in when we knew that she was in her last weeks just to say hello and to tell her how much they loved her. Those little things were the things that helped. Anne was a woman of deep faith, and the care that the hospital chaplains, our own minister and Rachel's pastor gave, dealing with all aspects of a person — the physical, the mental and the spiritual — was so important on that journey.

The Chairperson (Mr McGuigan): That is a good and positive moment at which to draw everything to a conclusion.

Without repeating everything that has been said, we identified earlier that palliative care, in some cases in the North, is a taboo subject. Some people do not like to talk about it. Today's conversation has therefore been extremely useful for the Committee's inquiry. We really appreciate that every one of you has come along and shared experiences, positive and negative, and talked so passionately about what you want to see happen and so lovingly about your loved ones.

We have jotted everything down, and what you have said will be extremely important and helpful for us and for our inquiry. Our job is to collate all that we have heard today and in the past number of months into a report, with actions that do what we all want them to do, which is to make a difference, bit by bit, until we get the system that everybody who lives here deserves and that improves palliative and end-of-life care for everybody's family, whether they live in a rural or urban area and regardless of their trust area.