We want to use case studies to illustrate the good experiences and the challenges that people face when using community-based specialist palliative care services so that we can learn from their experiences.
Rebecca’s mother was diagnosed with pulmonary hypertension and subsequently began using the community palliative care service. She passed away in April 2021 and the family kindly agreed to share a summary of the care and support received so that we can learn from the experience. We thank Rebecca for sharing her story.
The family found the staff of the specialist palliative care service to be friendly and helpful and their helpline to be invaluable, particularly over the weekend. They provided carers who were supportive and respectful, helping the family immensely. The equipment that was ordered arrived promptly and they also found the occupational health and complimentary services to be very good.
The family did encounter some issues with the overall process though.
Rebecca’s mother had decided she wished to die at home and was informed by the specialist palliative care nurse and the care planning (My Care My Way) nurse that they would arrange for her required medication to be prescribed. Following a call from the specialist palliative care service team, Rebecca travelled to her mothers’ nominated chemist to collect the prescription but one item was out of stock. Rebecca worked out that this was the pain medication that was needed immediately and then had to contact the palliative care service and various chemists to get the missing item. This involved travelling some way and leaving her mother alone at home. Also, when her mother reached the end of her life, there was another item missing that Rebecca was not aware of, as she did not know what was on the prescription.
Rebecca’s mother took a turn for the worst at 6pm, which due to service opening times, proved incredibly problematic. The local GP service informed the family it was too late for them to do anything and the 111 service said it was too early for an out of hours GP, so the family had to call an ambulance. When the ambulance arrived the crew asked for the District Nurses folder, which the family didn’t have, nor were they aware they should have had one. This was required as the ambulance crew needed a medication chart to administer the drugs. The crew did not have the ability to access the folder online (as they lacked S1 access) and it was too late for them to call the GP or specialist palliative care service (as they don’t visit out of hours). Instead they called for an advanced paramedic to attend so the drugs could be administered in the absence of the medication chart. This took a number of hours and was in addition to the missing item of medication, which now could not be prescribed by the GP either. This whole experience was very distressing for both the family and Rebecca’s mother.
Next, the District Nurses and other health professionals working with the family, arranged to meet at Rebecca’s mothers’ property to review her case but no one informed the family this would happen. It meant people arrived and the family did not expect them and didn’t know why they were there. One member of staff made a call on his loudspeaker and then had a conversation with the other clinician, suggesting Rebecca’s mother was rallying a bit but was basically at the end of life and did not have long left. This conversation took place in front of Rebecca and her mother, although fortunately her mother did not hear it. If she had it would have been an awful situation as she was understandably very anxious about what was happening.
Rebecca would like her family’s experience to inform improvements to the way in which palliative care is delivered so that other patients and their families receive better outcomes and the best care possible.
James looked after his mother as her sole carer during her terminal illness between 2015 to 2021. Their full moving story, in his own words, is available here and we are grateful that he has allowed us to share a summary of the care and support (both good and bad) that was provided to his mother and to himself, so that we can learn from this experience.
James’ mum, Joan, was originally diagnosed in November 2015 with terminal lung cancer. She was informed that there was no effective treatment available and that she had six to twelve months to live. She in fact lived for five and a half years with her son’s support and care and her spirit keeping her going.
In March 2021 Joan was discharged from the hospital oncology team into the care of the community for palliative care. There were delays and mistakes in getting a full and appropriate care package in place to support Joan and the quality of the specialist palliative care she received from this point varied, particularly in the critical final period when her health quickly deteriorated and an already challenging situation for her and her son became incredibly difficult.
Although Joan had access to District Nurses that on the whole were helpful, particularly in administering pain relief, and the social care support service provided appropriate and respectful care, there were many issues with other aspects of her care.
James (on behalf of Joan) was instructed to use the specialist palliative care service advice line and team, which wasn’t as helpful as expected. On numerous occasions, they recommended Morphine Sulphate oral solution, which Joan had explained she was not happy and fearful of taking. On other occasions, they repeatedly called the family to check when appointments or services were scheduled or whether they had started. They were also not particularly helpful when Joan eventually died, having informed James earlier in the day that they would take care of the necessary steps, they instructed James immediately afterwards that he would need to call 111 to request the out of hours GP service to come and confirm the death and then call the District Nurse service to come and disconnect the syringe pump drive.
Their GP service was hit and miss, involving many phone calls, few face-to-face calls and no home visits. Although this was happening during the Covid-19 pandemic, on several occasions it would have been useful if the GP had seen Joan to help with pain management.
A hospital bed was scheduled to be delivered to make Joan more comfortable at home but the planned help to transfer her into the new bed never arrived (a District Nurse eventually volunteered to assist James with this).
Access to medicines was a consistent problem – chemists in their local area (and beyond) struggled to fulfil prescriptions, for example a helpful neighbour sought the correct medicines from multiple outlets, none of which could supply the whole prescription. They also encountered problems with their local chemist not receiving prescriptions when they should have done, at a time when leaving the flat was incredibly difficult.
In the final day(s), the family requested a hospice at home service to provide 24-hour continuous care. They had considered changing this decision and transferring into a hospice but, at this stage, this was no longer an option, leaving them feeling forced to go ahead with the ‘at home service’.
The service was not as expected with all four staff members who attended seeming to lack a level of compassion and common sense. The first staff member arrived late (having called to warn this may be the case) and then entered the flat and bedroom without using Infection Protection Control (IPC), where she did not take off her jacket, wash her hands or put on the appropriate PPE or read the patient briefing notes.
James then left the room to change and rush to the shops. Before departing he returned to Joan’s room to say goodbye and found his mother sat upright and silently reaching out for a drink, whilst the staff member sat in her chair staring down at her mobile phone. The next morning the second staff member arrived to relieve her night shift colleague. She reacted loudly to the presence of Joan’s two cats (that had comforted her immensely during her illness) and the two staff members then preceded to leave Joan unattended and have a verbal altercation about the handover on the doorstep within earshot of Joan.
James understandably then asked both to leave as they were causing unnecessary distress with their behaviours and actions. After allowing the second staff member to re-enter the property and perform her role, he later witnessed them talking on their mobile phone to organise her schedule for the next few weeks in front of his mother.
A third staff member arrived that evening for the night shift and later confirmed that Joan had died after James informed her he believed that was the case. She then sat with Joan whilst James phoned palliative care service advice line, the District Nurses, 111 (for the out of hours GP service) and the funeral directors. She also left immediately after the GP certified Joan had passed away, leaving James, when he realised later, to clean his mother and ensure she was in a dignified state. A further staff member arrived at the flat after this (expecting to perform the next shift) and after being informed that Joan had passed away and there was no point in coming in, requested access to confirm the situation and ‘report back to her boss’.
Finally, as noted above, when Joan passed away, James was left to navigate the ‘system’ with no real guidance or support. In particular, the instruction to use the 111 service to secure a post-death GP visit, led to the awful experience of James having to answer the standard question set (for example ‘is the patient breathing?’) to progress the request for a GP visit.
Despite his experiences, James is keen that they contribute to the understanding of how the system currently works and how improvements can be made so that patients experience the appropriate, respectful and dignified care they deserve.
Gloria’s husband David passed away eight years ago, nineteen years after first being diagnosed with Alzheimer's disease. She cared for David at home until his condition suddenly worsened approximately sixteen months before he died. At this point, on the advice of their hospital consultant that it would be unfair to keep him at home, he was moved to a care home so that additional support could be provided. Prior to him entering the care home, they had been visited by an excellent nurse from the Centre for Palliative Care who helped them work through an extensive list of questions about end of life care and their preferred choices.
Whilst at the care home, David suddenly became unwell and started to shake for no apparent reason (this was later diagnosed as septicaemia). Gloria contacted their consultant and he arranged for an ambulance to move David to St Mary’s Hospital, where he received palliative care for the final six weeks of his life. Although he couldn’t express himself by this point, the staff were very good at listening to and understanding the family’s wishes in the provision of care. The family described the care received as incredible.
Unfortunately, the family did have a needlessly stressful end of life experience following the fall at the care home. The paramedics who arrived to transfer her husband to the hospital informed Gloria that they required the paperwork to prove his wish not to be resuscitated, in the event that his condition deteriorated in the ambulance. The care home could not find their copy of the signed DNR (do not resuscitate) form and the other copy was with the family solicitors and could not be accessed immediately. Fortunately, his condition did not worsen on the journey and on arrival at the hospital, staff accepted the family’s wish that David not be resuscitated. This was a shocking and stressful experience for the family, who believed that this had been discussed and correctly recorded previously.
The experience led Gloria to become involved as a lay advisor in the development of end of life (Coordinate My Care) plans, working with clinicians and the Royal Marsden to improve the plans/system and becoming a strong advocate for end of life planning. She was disappointed to find that, years later, the sharing of end of life planning information within the healthcare system still leaves much to be desired. Gloria has her own end of life care plan that she had completed with her GP. In January this year (2022) she was taken to hospital suffering from septicaemia and pneumonia. The paramedics that collected her from her home were unable to access the plan and she was later approached by a doctor at the hospital (who clearly could not or had not tried to access her plan) to enquire as to whether she wished to be resuscitated should the need arise. Thankfully she recovered and returned home but believes the sharing of information of patient and their families wishes urgently requires addressing within palliative care services (and the wider health service).
Madhu lost her 97-year-old mother two years ago. She was originally admitted to hospital after a heart attack and had a pace maker fitted. Whilst at the hospital, the family received different information from different clinicians and eventually found out she was to be discharged home, even though she “couldn’t lift a glass of water”. Prior to this, her care needs were not discussed with the family and there was no mention of carer support being put in place at home following her discharge.
On the day that equipment was delivered to the home, Madhu was informed by the consultant that her mother could not be discharged as she was having organ failure and she was instead kept in hospital. The family asked about hospice care and was told this would be no different to that provided in the hospital. In general, family wishes were not respected. She was kept on a general ward, though she was eventually moved to a separate room (after 2 days of family requests). Whilst in the general ward, there were not enough staff to clean her, so Madhu had to do this herself. The way she died and was treated still hurts terribly three years later.
A participant at one of our recent engagement events currently cares for her father at home (where he wishes to stay as long as possible).
He ended up being taken into hospital, where it took two days for them to contact her and enquire as to what medication he was on. She had to try and find out via their GP and the hospice advice line, which was very distressing. He also wasn’t eating at the hospital because his menu/diet was not appropriate. He didn’t recognise what was served as food (and the hospital seemed unaware of its own specialist menu or why it existed, i.e. for patients like this). She ended up cooking three meals per day at home to then take into the hospital for him. She eventually forced his discharge to bring him back home so she could care for him better there.
St Luke’s provided very helpful information and a booklet (through Dementia Cares) helped her list out some key facts about her father’s likes/dislikes/ daily schedule (e.g. what he will eat, when he wakes, when he goes to bed etc).
Her biggest anxiety as a family carer is that they will be put her father into hospital again – she stated that she should see hospital as a safe place but it feels like the worst place possible – he’ll go in and it will be like a black hole with her having no idea who will be caring for him and a complete information blackout. This places huge anxiety on carers and families.
Jim and his wife, Patricia, were both experienced healthcare professionals and worked as GPs in North West London. Pat developed CJD (Creutzfeldt–Jakob disease) in 2018 and was predicted to die within six months (95% of people with CJD die within 12 months). She actually lived for 18 months with the support of Jim, their family, friends and carers.
Given Jim’s background, from the outset he intended to play a very active role in deciding the treatment and care that could best help Pat but this proved difficult within a system that is not used to having their common practice challenged.
On the positive side, Jim and the family found the district nurses, carers and GP to be outstanding in their provision of palliative care services. In particular, the district nurses and carers worked hard to understand the family’s wishes and the type of end-of-life experience they were attempting to give Pat, listening to them with an open and constructive attitude, rather than immediately judging their care preferences.
However, they found other community service practitioners (e.g. physiotherapist, tissue viability nurse, occupational therapist) to be far less positive. These service providers believed that Pat should remain in bed at all times. Jim would bring her down each morning to join family and friends for visits, music and parties, even taking her out onto the patio to enjoy the sun shine on warm days.
Although Pat could no longer communicate, Jim could tell that she was happier in the family environment and knew that she would want this if she were still able to express herself. In this way she was able to see many engaging happy visitors (they had a wide network of friends and family, with over 100 people on their WhatsApp group) and have her hand held, all of which he judged would be better for her than a quiet room upstairs with a singular carer or family member for company. Jim is certain that this impacted on her longevity and helped her keep going during that final 18-month period.
This was one of many examples in which an insistence on the administering of ‘standard’ approaches and treatment protocols clashed with the family’s wish to do what they believed was best for Pat. When Pat developed two grade-three pressure sores whilst lying on a hospital bed (at home) following the failure of recommended treatment, the family developed their own plan (with the district nurse); this healed the sores and they didn’t return (which they accomplished despite much of her body weight lying on these points). These disagreements eventually led to a series of safeguarding complaints being raised against Jim - each of which was subsequently dismissed/refused by the safeguarding team.
Pat passed away peacefully at home, without needing a single night in hospice or hospital. The sun was shining through the window and her close family with her. But getting to that point involved many stresses that were unnecessary and could have been avoided.
There are a number of lessons that Jim takes from this experience that he thinks must be acknowledged or reflected in any changes to community-based palliative care services (or wider health services):
Empowerment - we need a vision (that we spread far and wide) that encourages people to think about the end-of-life period as an opportunity for empowerment of the whole situation, rather than thinking simply of the comfort of the individual or handing everything over to health professionals. People need to be helped to die at home in the best way possible for them – not just according to as professional’s protocol. Not everyone wants a quiet room where they are visited by carers three times a day. Some want to be with their family, friends and the things they love and enjoy. Such empowerment can build a compassionate community (e.g. the friends, work colleagues, school pupils/parents, faith groups etc) around the person who is dying; this can continue to develop after the person has died.
Guidance/permission for core caring team and extended network – people may not know what to do to help and may not feel allowed to do things. Guidance can change this. This guidance needs to speak directly to the core caring team (often the close family and carers) and recognise the immense pressure they are often under, but it also needs to speak to the extended friendship and family support networks and encourage them not to feel awkward and to have permission to come forward with the many ways they may try to help (e.g. from meals to child care/support etc). Permission also extends to the way in which clinical staff speak to the patients’ family/carer – sometimes simply reinforcing that they are doing a good job in trying circumstances is exactly what they need to hear and gives them the confidence to keep doing their best for the patient, particularly when the choices they face can be so difficult.
Integration – one major frustration is that currently end-of-life care can be perceived as a comprehensive mess with many examples of a lack of join-up between primary care and community care services. As a minimum, going forward the different service providers must be required to speak to each other and seek to develop teams to work together around the patients’ needs in the home environment with case conferences being a routine part of this.
Accountability/supervision/teamwork – the way in which accountability and supervision work within our complex system of many moving parts are currently inadequate or too slow. When families are empowered to make more of their end-of-life decisions individually and specific to their needs, inevitably these may clash with our current system of expected ‘one-sized’ model. We therefore need greater clinical supervision and guidance for the individuals within the system that have to make decisions or challenge the decisions of others (e.g. attending therapists or specialist nurses etc). Also we need to enable greater input and supervision from district nursing teams who often know far more about what is happening in the patients’ home/life but who are perceived as less senior than some other staff working within community services.
Handling conflict – dying will bring out the best and worst in people – some family, friends and even care staff will disagree with the approach you choose to take and claim it’s bad for the patient, perhaps even ‘killing’ them. Sensitive discussions about different opinions rather than accusations are important. If possible, people need to have difficult conversations about end-of-life care preferences early, so families can agree a way forward, get their affairs in order and lessen the likelihood of ongoing disputes further complicating the stressful late period of life for the patient and their main carer(s).
Dementia Adviser case study: communication difficulties encountered in accessing appropriate palliative care information and support for mother with dementia and family carer daughter
Dementia adviser received a referral from one of the psychiatric nurses from Hounslow CIDS/OPMHS team for Mrs T to have a side-by-side (befriending) volunteer. Dementia adviser contacted K, the daughter of Mrs T, on 23rd February to explain that there was a waiting list for this service and to let her know about other similar services and to check if any other support or advice could be offered.
K said that her Mum was now in hospital and being discharged to stay at home with her tomorrow as she is now on palliative care. From there she will be going to a hospice. K said that she would like more support and advice about the palliative care and what is going on now. I arranged with K to call her 4th March for a telephone assessment.
K explained that her mother, who had dementia and was on end-of-life care due to cancer, was back at Charing Cross Hospital. Her mother was a Hounslow resident.
The week before her mother had been discharged home to her daughter’s care the hospital discharge form stated that district nurses should visit daily but these visits did not happen for the first day her mum was at home. K had called the district nurses who said that they would only come out if her mum was in pain. Then on the following Monday her mother developed bronchial pneumonia and was admitted back to hospital.
K asked for her mum to be discharged back home to her care as she did not feel that she was getting the end-of-life care that she needed whilst in hospital. K was hoping that the carers who had come the previous week would be calling four times a day when her mum was discharged again because they were very good.
K faced many challenges during this time, including from the hospital staff: when she asked a member of staff why her mum was not being given water to drink, she was told that (despite her carers passport) she could only stay for an hour and should leave. Her mum was due to go to Meadows’s House but there was no bed available. This would have been her preferred place for her mother to be in. The daughter felt that the palliative care support and advice had been limited and she that she had to coordinate everything.
K had tried to talk to doctors about her mum’s palliative care needs and due to her mum continually changing wards, several scheduled meetings did not take place. These included telephone calls and a meeting that she had come in for at a specified time and ended up waiting for three hours only to be informed that her mother had been moved to another ward and that the meeting had been cancelled. She also was concerned that her mother had been given meals and that there was no one to support her mum to eat her meal. Her mother was meant to get a speech and language assessment for her illness, swallowing reflex and further advice for her mum’s eating and drinking and this had not happened. She had spoken to a doctor again to state that this needed to be done and she also felt that the meals were totally unsuitable for her mum. She had spoken to PALS at the hospital who had got back to her after she raised concerns about her mum’s care and was told that everything had been dealt with. Her mum had days to live. Dementia adviser referred to patient representative Barbara Benedek to see if someone could talk to K about the issues she had raised.
K said that she had a telephone contact from someone from Meadow’s House, but they only work three days a week and her Mum’s GP only works 2 days a week.
The following two dementia support outcomes were agreed following our assessment call:
1. I would like.to know more information about other hospices and the type of palliative care and what is being done, as it is not enough,
Action: Dementia Adviser to send links to the Northwest London consultation, Healthwatch and how to raise concerns.
2. I would like to know who I can get advice from as mum is at end-of-life care.
Action: Dementia Adviser to contact patient/ carer representative to see if a palliative specialist can speak to the daughter
Dementia adviser contacted Barbara Benedek who immediately contacted Dr Treena Saini Consultant in Palliative Medicine who requested more information by email. On the same day Dementia adviser updated the daughter and shared a telephone contact of who she could speak to at Meadows House.
Dementia adviser shared information about John’s campaign (started because of a poor experience of a relative’s treatment in hospital) supporting the rights of carers to be involved in their loved one’s care. https://johnscampaign.org.uk/
Dementia adviser shared details for Healthwatch Hounslow and specific link to Healthwatch feedback to Charing Cross Hospital where she could give immediate feedback and there was an option to be contacted by the hospital.
Dementia adviser sent information about palliative care and consultations that included the information about hospices in Northwest London and a live video of a zoom consultation where carers were present giving feedback about palliative care in Northwest London.
Dr Saini phoned Dementia adviser on Monday morning to say that because Mrs T was at Charing Cross hospital she cannot influence the treatment. She said that Mrs T was finishing her treatment would be put on a drip. She has been trying to get hold of the hospital just to have a chat. Mrs T was on the bed list for Meadows House and once treatment is finished the two teams would liaise together. She asked if K preferred her mum to go to Meadows’s House and then home. Dementia advisor clarified that the daughter had wanted her mum to go and stay in the hospice as soon as a bed became free and wanted her mum to go to her home in the meantime as she was not happy with her mum's care at the hospital.
Dr Saini said that there is a 24-hour number for Meadows House that K could call and that it is not part time. Dementia advisor explained that the person allocated to help K was only part time. Dr Saini said that she would ask one of the nurses who knows the daughter to call her to see what support the team can give her whilst her mum was in hospital. She said that for issues re the hospital the daughter could contact PALS which the daughter had done but was not happy with the response. K was also very tired. Dementia adviser thanked Dr Saini for her help. Dr Saini said that she had not been able to do anything yet but was trying to get hold of the hospital. She did not know when one of the nurses could phone K as she wanted to ensure that it was a nurse that knows K before asking them to call her to offer support.
Later in the week Dementia adviser called K to see how things were going and she informed her that her mother had died earlier on in the week. K expressed surprise that Dementia adviser had not been informed of Mrs T’s death. Dementia adviser offered her condolences. K said that she was feeling very up and down and had a friend with her.
It was sad to hear this news and that despite sending K the information and getting her some further support from a palliative care nurse that it was all too late.
Contact for further information: Kate Sergeant, Local Services Manager firstname.lastname@example.org
The personal responses below are from a carer whose loved one was living with dementia. The questions were developed following informal discussions with carers of people with dementia.
I am not sure if you are asking about palliative care or specialist palliative care. No one has been able to make the difference clear to me. I think all patients with a terminal illness need the same kind of care.
Q. When thinking about community-based specialist palliative care what are the three main issues that we need to consider when communicating with carers of patients diagnosed with dementia?
- Patients don’t die of dementia – and their diagnosis happens way before death (usually). By the time the deterioration caused by dementia and/or other illnesses are serious, the patient is probably no longer under the direct care of the dementia service It then depends on how aware the GP is to palliative care services in the area.
- There is no estimate of time of death that comes with dementia – clinicians don’t always think about end of life when dealing with dementia patients. Palliative care services may not want to take on the care of a patient when they have no idea how long the patient might live
- No one who cares for dementia patients clearly has the responsibility for speaking to the patient and family about end of life and their end of life wishes so it just doesn’t happen
Q. The evidence tells us that low numbers of dementia patients are referred to community-based palliative care services, in your experience, what are the main reasons for this?
- See above.
- Dementia patients often have many different physical conditions which are treated but far too often no one is looking at the whole patient. They should really be under the care of a geriatrician with support from the dementia psychiatrist.
- Dementia, in itself, isn’t a terminal illness – which would help clinicians work with patients regarding end of life. Instead, the slow deterioration of swallowing, mobility, cognition, behaviour do contribute to poor care and developing other conditions.
Q. How could community-based palliative care services be improved for carers and patients diagnosed with dementia?
- All clinicians caring for dementia patients need to understand that they don’t die to predictably and that they are likely to need some level of end of life care for a long time
- As patients begin to deteriorate, patients and carers should be referred to palliative care.
- I think that a variety of different levels of support from palliative care could be provided: initially emotional support and practical advice (maybe palliative care team could offer on demand help or group sessions) - and then full end of life support when needed
- Getting the balance right between telling patients that they have dementia and helping them address end of life issues. Someone within the dementia service should be charged with starting end of life discussions. The Mulberry Centre cancer charity does this well.
Q. What do you have to consider when working with carers and dementia patients from certain faith groups?
- Sorry – no view on this – except perhaps to make clear that palliative care is NOT assisted dying which may concern some people – but rather dying as comfortably and peacefully as possible
Q. How do we best support families and carers of dementia patients when accessing community-based palliative services?
- See answers to item 3
Q. Are there any dementia groups that you work with who we could speak to?
- When I know more about how you plan to involve them, I will suggest groups/individuals to contact.
Q. Any other information that we should take into account?
- YES – behavioural issues caused by dementia are often a barrier to proper palliative care support. The palliative care service often asks the dementia teams to help with behavioural issues but the dementia teams in mental health services say that they are not staffed or funded to provide this support. That barrier needs immediate attention.
We would like to thank Mrs Thomas for sharing her and her husbands story.
RJC: So for this interview I wanted to talk to you about you and your husband’s experience, when he became unwell and the lead up to being referred to palliative care, which you told me about a couple of days ago. To share your thoughts and feelings around palliative care and the care your husband received. But before we do that, let’s talk a little about your history.
AT: My name is Armelle Thomas, I came to England in 1968. I have lived in the London Borough of Hillingdon since 1969. I worked in the cosmetics industry and also as a Market Research Executive Interviewer. I met my husband Tommy's in 1969, we got married in 1970. I was 24 and he was 48.
He volunteered for the Royal Air Force at 17 and a half in 1940. He was in a Special Duty Squadron, helping the resistance in France. And in 1946, when he left the Royal Air Force, he became a founding member of British Airways.
RJC: Can I fast forward you a number of years? Not that I want to take you back to those times, but can you tell me when your husband first became unwell and just before the time, he needed palliative care. What was the journey like for you up to that stage?
AT: Ah well! I remember so clearly, we used to travel and take nice holidays and in 2004, Tommy had an angina attack, so we stopped flying. Well, I didn't want him to have a heart attack or stroke, you know, while he was flying or on holiday abroad. So we never flew again.
At the beginning of September 2004, we went to see our GP, which we did regularly. And can you believe it, of all places, Tommy had a heart attack in the surgery. He nearly died on the floor of the surgery and was rushed to Harefield and was in intensive care for a week. They saved his life. And so from there on, really I became, I suppose, his carer, not that I saw myself as a carer. I was his wife. That is what you do.
You know, as a carer, you are under the radar, we don’t cost anything. We are invisible and I felt alone and invisible.
RJC: Had anyone spoken to you then about palliative care?
AT: Oh no, nobody had spoken to me about palliative care until 2015.
In July 2015 I knew that my husband wasn't well. I mean, you know, I had lived with him for 46 years. I knew him well, and I knew something was wrong.
When he was in hospital, I stayed by his side, when he was discharged, I was told he was dying, by his own doctor.
RJC: I know how hard this is for you. You talk about it as though it happened yesterday. Can I ask where did he prefer to die?
AT: It still feels like yesterday. Where to die? Oh, absolutely, at home. When we saw our GP and sat down, he said. I'm afraid there's nothing I can do, which we knew. So he said. I'm putting palliative care in place, which to me meant the Doctor putting palliative care in place.
Two weeks before his death Tommy came down the stairs and he fell. He was so weak by then.
RJC: And was the palliative care support, had that been coordinated?
AT: There was no palliative. What we got was rapid response. Rapid response is there to put you back on your feet, it is not palliative care. I said this isn’t palliative care, they refused to refer us.
RJC: I thought you said that the GP said he was going to organise palliative care.
AT: Yep. He did, and the nurses didn't do it. Tommy was taken upstairs to bed and he never came down again. And he died 2 weeks later. Now when you talk about palliative care, why couldn’t he have had that service immediately?
So the first night we had rapid response. came in, very unpleasant. went upstairs. They called him by his first name, John, which is a no no. Nobody ever called him John in the UK.
RJC: Did they not ask how he preferred to be called?
AT: Oh no, of course not. They called him John, which irritated me. He was a war hero, he was decorated. The least they could have done was to ask. So two of them came in, went upstairs. There were unexpected because nobody phoned me to tell me they were coming.
And I said, can you help me to feed him? Oh no, we don't do that at night. Right. So I said, well, can you help me washing him? Oh no, we don't do that. So I said, well, what do you actually do? Why are you here?
And then, because it was raining, they refused to remove their shoes, we've got carpet everywhere. I had put a very large cloth down, to protect the carpet. So they objected to it, for health and safety reasons.
I was losing my husband. I wanted the very best care, and I had the worst nightmare. And they couldn’t take their shoes off and told me about health and safety reasons.
AT: I made a sign, which said, my name is ‘Mr Thomas. Can you please give me care, compassion, dignity and respect? Thank you’.
AT: The following Saturday night. It was still the first week. He was in spasm. And I was on my own. Still no palliative care. And I didn't know what to do. I didn’t want Rapid Response. Tommy didn’t want to go to hospital. I was told any problem call 111 because you now have a Coordinate my Care plan. So I called 111.
I went through all the questionnaire which was totally irrelevant, and at the end they said, what's happening, I said my husband is dying. They said we are calling the paramedics. I said I can't have paramedics because my husband wants to die at home. They came and settled him down and me.
The next morning the district nurse arrived, she looked me in the eye and she said to me, ‘Mrs Thomas, your husband is not a priority. There are people dying in Hillingdon today. Somebody else will have to die for you to get palliative care and you will get a healthcare assistant or nurse, or no one at all.’
My stepson was with me and he took all the details and he read them the riot act. And that afternoon. Harlington Hospice phoned me and said you will have a nurse tonight.
RJC: So are you saying, that is what it took to get palliative care?
AT: Yep. At 10pm, Jenny arrived, she had delivered palliative care for 20 years, and she called us, Mrs Thomas and Mr Thomas right through. She stayed with us all night. And we were blessed to have her for five consecutive nights, and on the Thursday night, she said to me, Mrs Thomas, I will not be here tomorrow because I've got my day off. But I will see you at the weekend. I said he would not be there at the weekend.
AT: Getting back to the district nurse. When they arrived, the first thing they said Oh, we can't have that bed. We need a medical bed. And I said, well, we don’t want a medical bed.
RJC: You mean the bed in the home?
AT: They called it a hospital bed. You know, this meant I couldn't sleep with him. I refused and said no. This started a dispute. So my GP convinced me. But this wasn’t about me or Tommy, it was about them. I mean this is insensitive, it is cruel. I'm still traumatized about this.
We had slept facing the same wall for 46 years. They changed the bed. Tommy never recognised he was at home. He was in his bedroom. You know, and they even managed to destroy that. I had to reassure him he was in his home
I pushed the two beds together so I could cuddle him. He could hear me and he could feel me. To the end, that's all I could give to him. But it was important that I did.
RJC: You mentioned the five days of the palliative care nurse. What did you feel about the palliative care nurse?
AT: She was wonderful. She was a dream.
RJC: Can you just tell me very quickly what made that experience wonderful?
AT: The complete opposite to all of the others. The care, the compassion, the dignity, the respect.
RJC: What would your vision be for palliative care? Maybe that question is too big, but what would you say?
AT: Care, compassion, dignity and respect, doesn't cost anything, right? It's not about money. You come in and you are a guest in that person’s home and you behave as a guest. I was told about tasks. My husband is not a task. I was told my husband was not a priority. Yes, he was. He was a priority to me after 46 years. He was my husband, my lover, my mentor, my teacher.
I will never have a district nurse in my home, never. To answer your question, palliative care nurses, need to be trained in compassion and respect, that is the most important when someone is dying. You live your day, like it is the last and not medicalise someone. The palliative care nurse we had was wonderful, but we hardly had her, I had to experience trauma before we got her.
AT: They have traumatized me to certain extent. They were telling Tommy a week before he died that he had to wash himself. I said, that's your job. That's why you are here. These people never had customer care training about care, compassion, dignity and respect. No way.
AT: I didn’t want Tommy to experience what he did, or me, but he did. It is the same for anyone, let people die with their dignity. The parts of their lives which are important to them, please respect it, even if you don’t agree, respect it. Our Palliative Care Nurse had all of that compassion, but the damage had already been done.
RJC: I would like to end the interview there, we have spoken for over 2 hours and I found it moving and passionate. I would like to express my thanks and we will catch up soon.
AT: Thank you for giving me all this time to really express my feelings.
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