Hidden patients, hidden palliative care needs

October 9th 2015 ...in category Commissioning Excellence

Again and again we find there is not enough focus on long-term conditions. And after all, following diagnosis all care for long-term conditions, where there is no cure, is essentially palliative.

The conclusion we come to is that if there is not enough focus on long-term conditions that means there’s not enough focus on palliative care either.

The theme for this year’s World Hospice and Palliative Care Day on 10 October is ‘Hidden Lives, Hidden Patients’. This couldn’t be more relevant to patients with neurological conditions – the Neurological Alliance’s report earlier this year revealing the state neurology services was entitled ‘The Invisible Patients’ to reflect just how forgotten they are when it comes to service planning.

In our work around the country we speak to many patients with different types of neurological conditions and they repeatedly tell us that palliative care provision isn’t good enough in their local area.

The question for many clinicians however is when to initiate conversations with the patient about palliative care. Bringing up the ‘palliation’ word marks a major point in the patient’s journey and many clinicians are reticent about approaching the matter, worrying that a patient will feel uncomfortable and won’t want to talk about it, and indeed for certain patients that is true.

However many patients are in fact wanting to have those discussions and by not doing so we are doing them a disservice. A common scenario is that of a patient like John, who is a few weeks post-diagnosis, is in the early stages of Parkinson’s and whose symptoms are currently mild. Many clinicians will not feel that palliative care is appropriate here. But for John the existential fears about losing his capacity and become dependent are a huge burden. John will in the normal course live for decades with his Parkinson’s but he is already extremely worried about making decisions with his family before it’s too late. In this case a conversation about palliative care and advanced decisions could really help put his mind at ease.

Putting palliative care on the agenda makes a huge difference for many patients, and there is a need for people like John who would really benefit from early discussions. Services need to be designed to be responsive, by identifying and addressing the needs of neurological patients who may well benefit from the expertise of palliative care services – not necessarily having to actually receive services – but the expertise and advice palliative care clinicians can bring to care requirements.

The importance of palliative care for neurodegenerative conditions is increasingly being recognised and in line with the WHO definition, it may be appropriate but some clinicians may be unaware of the evidence supporting its use or the type of patients who may benefit from it.

On the practical side, new tools for identifying patients with unmet palliative care needs are being developed. Once we know a patient needs palliative care, joined-up, integrated services are crucial so that clinicians can link in with specialist palliative care colleagues and the rest of the multi-disciplinary team to provide effective services.

It is essential that services get to grips with the total care needs of their patient population including palliation especially because the demands on specialist palliative care services from chronic, non-malignant conditions are continuing to grow. This means that more than ever the correct identification and triage of unmet palliative care among patients with long-term conditions is crucial to ensure maximum patient wellbeing during the course of their condition.

About the Author

Sue Thomas

Sue Thomas

Chief Executive for Commissioning Excellence

View more posts by Sue Thomas

October 9th 2015
...in category Commissioning Excellence

Commissioning Excellence

As one of NHS England’s recognised niche specialist commissioning support providers, we offer a full range services to assist you in improving patient outcomes. Our experience covers all long term conditions, with a particular specialism in the field of neurology.

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