In sickness and in death: an NHS that is there for you

Rajan Madhok

What is the ultimate purpose of the NHS? To be there when people are ill; to give them a good quality of life; to make them better when possible; and, if that fails, to enable them to have a pain-free and dignified death.

Easy to say, but hard to do, as shown through poor experiences of patients, and carers in various studies and personal observations, and I have written about it too. So, when the NHS recently rose to the challenge and showed that a better service is possible, I wanted to share our experience.

My partner, Helen, died on 17 Sep 2025. She had breast cancer in 2021-22 and it came back with a vengeance. Vague, mild symptoms for a few weeks suddenly assumed great significance with abnormal blood tests.

Visions of long waits for scans and clinic appointments flashed through my mind, and I started ringing private imaging centres to explore alternatives, while her GP reached out to the Cancer Centre at Glan Clwyd Hospital.

A cancellation led to a CT scan two days later, and an oncologist review the next day. The situation by then was challenging, but well managed by the Oncologist with further tests to decide the next course of treatment, and a planned return in a few days, with interim treatment in the meantime.

Community services

The follow up confirmed the terminal nature, and in accordance with Helen’s wish she was sent home (anyway there was no bed available at the Centre) and next day the whole community services swung into action. By 930 next morning, the palliative care nurse and occupational therapist were there, soon to be followed by the advance nurse practitioner/district nurse and the GP, and all of them working to organise services to enable Helen to stay at home, with appropriate equipment and medication.

A possible 12-18 months prognosis initially was revised to 3-6 months, then few weeks, and in the end, Helen had less than a fortnight from alarm bells to passing away.

It was a challenging period, an emotional roller coaster, but nothing was too much trouble for the professionals: one minute we did not want the hospital bed (enabling her to stay in her own bed) to then changing our mind, and just when the bed was loaded on the van for delivery, asking for it to be postponed; going to the hospice and then wanting to stay at home, or with aspects of personal care.

Prompt 24/7 telephone access, not just reactively but proactively to check, and “do not worry, I will just pop over now”; training us in giving medication to keep Helen pain free; and making sure the carers were not overlooked either.

Uncommon

How did this happen? From our recent experiences, it is not universal, and indeed is (very) uncommon.

The usual scenario is long, anxious, waits – tests then specialists then planning treatment etc – a sequential approach to patient management, rather than a holistic, forward planning, anticipatory approach working simultaneously on various aspects.

Was it the Oncologist – Dr Julie Jones? Certainly, the community team that arrived next morning mentioned how she had come down to the team and emphasised the urgency, especially as it was a Friday.

Was it the team – Leah, Vicky, Jeanne, Teleri and Debbie and many others – who had a practised, coordinated, and effective approach to care for her till death certification?

Was it the GPs – Drs Sian Glover and Gwenllian Sion who realised the seriousness from the blood tests onwards, and even checking that I was OK after her death, although they are not my GPs?

Was it Helen herself? She had a very positive attitude, she trusted the professionals, respected them, and was grateful. Some of them knew Helen from the time she had her original cancer – her patient story had featured at the Health Board meeting some time ago also.

Could it have been something to do with me- I am a doctor, who has commented extensively on the NHS, and am on the Board of Llais?

Was it because it was such a short period, and if it had gone on for weeks and months, would the professionals have been able to sustain it?

Who can tell why it all happened, but we can give thanks and we can learn.

Stoic

Could things have been done differently? What could Helen have done – she was very stoic, even taking the dogs to the local, Cyffylliog, dog show (where her two dogs as usual won prizes) three weeks before it all started, and not complaining much.

Could I have done anything- I had stopped clinical practice a long time ago, had gone into full time medical management, and did not feel confident, instead relying on the system to pick things up, but still?

Could her clinicians have done anything to be alert to spread of her cancer – after all her breast cancer was notorious for coming back; are the current guidelines for follow up up to date, or better interim management? And one can keep ruminating, and doing the What Ifs, but the reality was that it was a rapidly evolving situation, not a usual presentation.

But it is worth reviewing and reflecting on, and exploring how to ensure that this does not remain a one-off experience and is available to every patient and their carers.

Patient-centric care

The hallmark of a good health service is patient-centric care, ensuring that patients and carers get the right support, but often this is lacking. The service also fails to take account of what the patients want, imposing professional views on personal wishes; not recognising that patients and carers are aware of the pressures on the NHS and the staff, and want to help them in return. Helen had been very clear about what she wanted, she knew what was coming, had accepted her end, set about planning for it and putting her affairs in order, and did not want to take up unnecessary NHS resources.

Few days before she died, we wrote about her (our) views on Assisted Dying.

She knew this is a controversial subject, and respected different views, but till the end she could not understand the opposition; she was grateful for the palliative care just as she wanted to have the option of Assisted Dying before she lost her dignity.

Her final illness was mercifully short, she was still able to talk to a few close visitors, especially my brother who came from India, the day before she became very drowsy with some agitation, but it would have been everything she feared had it gone on longer. I still have to live with her loss, but to be there unable to help end her suffering would have made it so much worse. Did I think how I could end her life for her – yes, I did, because that is what she wanted, and which for her was an expression of love. She was a keen dog-lover and a farmer’s widow, and believed that animals are sometimes treated better than humans.

This has not been an easy piece to write, especially as Helen was very uncomfortable being in the spotlight; she was a happy and contented person, lived a full life and was ready to embrace death. But she encouraged me to share her experience to express her gratitude, and because she wished the same for everyone – a good life, and a good death.

We have a long way to go, but her experience is another reason why we must persist and create a better, and fit for purpose, NHS. It did it this time, thanks to the excellent professionals, and can do so again, and again. We owe to the patients, their carers, and to the staff.

Rajan Madhok is a retired Public Health Doctor. This article is written in his personal capacity. More details of his work are available at www.ramareflections.com