Everyone’s life is worth a couple of hours consideration surely?

My Mum is in an excellent home that specialises in dementia care. They do really well officially in all the CQC inspections but the reasons I think it is excellent are:

  • They genuinely love and care about my mum & mum is happy, at home and well cared for
  • When I visit, I am not just a visitor, I am part of the family
  • When I need to review the care plan, I feel able to talk anything through, even when it is challenging
  • They have excellent links with the GP and I am included in any decisions

A few years ago, I had a meeting with the Care Manager and we went through something called a Treatment Escalation Plan…this helps everyone make decisions about what to do in the event of failing health or accidents. The reason I was so upset recently is that the context of those decisions within that plan have changed in light of the Covid-19 pandemic. A few years ago we discussed what would be done in the case of cancer, heart attack, old age (i.e. organs closing down) and the best way to manage those events. We came to the decision in that discussion that a DNR would be appropriate in the event of heart failure but in certain circumstances, admission to hospital would be correct and it would be decided at the time. We did not discuss pneumonia in the event of a pandemic where admission to hospital would be solitary.

Therefore I had a sleepless night thinking that I had not discussed things through properly and needed to consider things more carefully. I wrote a long email to the Cae Manager with a stack of questions. The care manager got back to me with a detailed response today and I also had a long conversation on the phone. At the end of that we came to the best decision for Mum with her particular health conditions and dementia stage. It was factual and compassionate and I feel like I gave that decision the attention and consideration it deserved. I was also offered a conversation with Mum’s GP but I felt that I had all my questions answered and felt confident.

The reason I am writing this is that everyone who has parents in a care situation needs to know that it is not appropriate for people to be pressurised or rushed into making a DNR statement. Everyone’s life is worth a couple of hours consideration surely? I will share here again the excellent advice issued to care homes from the British Geriatric Society and in particular draw attention to the section on “Decisions about Escalation to Hospital” in light of the Covid pandemic. Ask the care providers for a Treatment Escalation Plan (TEP) discussion and make sure the Frailty score is taken into consideration when discussing DNR notices.

It was explained to me a few years ago that heart resuscitation would be devastating for my Mum with her particular conditions and her age. Today, I found out the likely effects of ventilation on my mum with her particular health conditions….and that is what I needed to make a proper decision. Do not be fobbed off with a general letter, pressurising you or someone you love into making a rushed decision.

Unfortunately, some DNAR notices have been added to people’s plans en masse in certain care homes in the country. From The Guardian:

“People in care homes in Hove, East Sussex and south Wales are among those who have had “do not attempt resuscitation” (DNAR) notices applied to their care plans during the coronavirus outbreak without proper consultation with them or their families, MPs and medical unions fear.”

The CQC has issued a notice saying this needs to stop:

“It is unacceptable for advance care plans, with or without DNAR form completion, to be applied to groups of people of any description,” the notice states. “These decisions must continue to be made on an individual basis according to need.”

In the discussion with the care home, I also asked about what care would be provided if Mum got ill and how they would manage that in the care home. The response was genuinely outstanding. They have worked so hard and so has the NHS to build extremely strong links between the home and NHS services so that they can manage a Covid outbreak in the home and give people the care, medication and if necessary the Oxygen they need. I am extremely grateful for everyone’s hard work and skill developing the contingency planning.

I feel I can help by asking my MP if their plans will be resourced. After all the care home is taking on the role of the NHS in this situation and therefore, they need to be supported by the state. Otherwise, the state is relinquishing its responsibility of a section of society.

Lewis Goodall, puts this perfectly at the end of the video: “Social Care is, in effect, being asked to become part of the NHS. To do things that normally only the state would do but without the resources and scale that only the state can provide” 

Yesterday, I wrote to my MP to ensure that the state really is providing care homes in our area with the medications, oxygen and PPE that they will need. Today I got a disappointing response where she said that the care questions could only be answered by the home.

reply to letter 03.04.20

Obviously this is correct up to a point and of course I communicated with the home. However, the resourcing issue is beyond the remit of a Care Home.

I wrote a reply email today, reflecting on Lewis Goodall’s report. This is the key excerpt from my email

“They are being asked to provide HEALTH care for people with Covid which they have not been trained to do and it is the State’s duty to provide HEALTH care.

Say, a person (who could be my mum) in the home is struggling to breathe, what are they to do? Will they have Oxygen? Will they have back up health care from the community IF they cannot be admitted to hospital? Will they have drugs (palliative or otherwise) readily available?”

The care home has planned for care and Oxygen and medications and so has the GP Practice but they can only supply this is the state has done its part and we all need to do our bit to scrutinise this. We cannot allow the health provision of a whole section of our society to be palmed off on care providers without support from the state. That is indeed a slippery slope.