Day 2,324 in the Nanny June Care Home

The One With Meetings of Acronyms

I used to think people dying was like in films or tv dramas - people got sick or injured and then they got worse… and despite a flurry of last ditch attempts to save them with chest compressions or adrenaline or defibrillators the exhausted staff still found themselves calling time of death. Or playing out in an alternative scene there were heartfelt conversations about making peace with themselves and facing their end while holding hands with a hospital porter/innocent passerby /vicar as they took their last breath and everyone around felt the tears well in their eye.

Some deaths might well be like that. I know people in my own family who were robbed of the chance to say goodbye to the person they loved because it was just so quick. Nanny June herself said goodnight to the love of her life one evening as he went out and the next time she saw him was in the mortuary.

A lot of deaths however are also not like that. When someone has failing health and a terminal prognosis their passing can be a slow, drawn out, emotional and uncomfortable affair. Going on for days or weeks or even months. There is a diagnosis and a prognosis. A care plan and interventions. No one is working to a specific timeline. Partly because people are human and that means unpredictable, and can hold out to meet a new baby, or wait for Christmas, or hang on until that last person is at their bedside. Some people relentlessly fight the good fight with superhuman strength and dignity and ride out of this life knowing they fought back more than I would have thought possible (my brother for example).

People are asking after Nanny June and I suspect people are surprised she is still alive. The care home didn't think she would make her birthday earlier in the month. The Grim Reaper doesn't work to anyone's agenda or adhere to social expectations. Sometimes you just have to wait it out. And it is not nice. Life suddenly becomes a very sharp contrast of light and dark, both emotionally and spiritually. We can divide time into what is of now and what is going to happen later. Of what was, what is and what what will be. What you have left and how that is now what you have to lose.

Nanny June now weighs just 6 stone 9 pounds. She is non verbal. She lacks capacity. She sleeps on an air mattress and is turned in the night to prevent bed sores.

Over 8 weeks ago I had a letter from the NHS to initiate the process of moving Nanny June into palliative care. (Good thing Nanny June wasn't in a hurry to die). So yesterday that process began yesterday with a MDT DST meeting. I should take this moment to say that the local authority and NHS are saved only by the front line staff that drag these institutions up from their under resourced and underfunded existence to shine a light of hope that something is under control and try to reassure us that everything will be okay.

We care for dying people in many ways. My way of caring yesterday was to sit through a MDT DST meeting.

Fun times.

So for reference:

MDT: - Multi Disciplinary Team - for us this consisted or the Care Home Deputy Manager, an agency Social Worker dialling in from Chester, a Complex Care Specialist Practitioner Nurse and not a GP in sight (although the briefest of brief report had been submitted by them for the meeting so that’s something).

DST: Decision Support Tool

The meeting is intense and emotionally testing and generally unpleasant. The nurse chairing the meeting said we could break at any point if it got too much. But it had to be done. It is what it is. Advocacy is part of caring. Standing up to a system is not easy. None of it is easy 💔

Unfortunately to date this was my third MDT DST meeting so it didn’t steamroller me (quite) as much as the first two. But thankfully most people don’t have to do these at all. And because I can do it without reeling quite so much this time, although the emotional fallout is still almost unbearable - I share this stuff because this knowledge shouldn’t be the property of the faceless authorities who gate keep through endless processes and acronyms.

So if you want to know more about what this meeting was - the below is taken from the gov.uk website because knowledge is power and just knowing this is even a thing might help just someone.

What is a DST?

1. The decision support tool (DST) is a national tool that has been developed to support practitioners in the application of the national framework for continuing healthcare and NHS-funded nursing care 2022 (the ‘national framework’).

The tool is a way of bringing together information from the assessment of needs, and applying evidence in a single practical format to facilitate consistent evidence-based recommendations and decision-making regarding eligibility for NHS continuing healthcare.

All staff who use the DST should be familiar with the principles of the national framework and have received appropriate training.

When to use the decision support tool

2. The DST should be completed by a multidisciplinary team (MDT) following a comprehensive assessment and evaluation of an individual’s health and social care needs. Where an assessment of needs has been recently completed, this may be used, but care should be taken to ensure that this remains an accurate reflection of current need.

3. The comprehensive assessment of needs should be in a format such that it can also be used to assist integrated care boards (ICBs) and local authorities to meet care needs regardless of whether the individual is found eligible for NHS continuing healthcare.

4. The assessment of needs should be carried out in accordance with other relevant existing guidance, making use of specialist and any other existing assessments as appropriate. The DST is not an assessment of needs in itself.

5. The assessment of needs that informs completion of the DST should be carried out with the informed and active participation of the individual wherever possible.

The individual should be given the opportunity to be supported or represented by a carer, family member, friend or advocate if they so wish. The eligibility assessment process should draw on those who have direct knowledge of the individual and their needs.

6. An individual will be eligible for NHS continuing healthcare where it is identified that they have a ‘primary health need’. The decision as to whether an individual has a primary health need takes into account the legal limits of local authority provision. Using the DST correctly should ensure that all needs and circumstances that might affect an individual’s eligibility are taken into account in making this decision.

The concept of the ’primary health need’ is explained in paragraphs 55 to 67 of the national framework.

7. Completion of the tool should be carried out in a manner that is compatible with wider legislation and national policies where appropriate.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool/nhs-continuing-healthcare-decision-support-tool-guidance