Why are we waiting? Covid and a national urgent care planning service


‘There is now covid-19 in my mother’s care home, although not on the dementia floor.  The home was all over covid-19 specific advance care planning and had it in place by the end of March.  

I have a friend whose father is a resident of the floor that has covid-19 and he has tested positive.  Today, the home had to call out a paramedic for him as he was unresponsive.  The paramedic rightly said he would have to take the father to hospital as he didn’t have evidence that the father wanted something else.  

His covid-19 specific advance care plan was not on the electronic system available to the carers and the paramedic, but had been carefully filed in the administrator’s office – along, I think, with all the other similar plans, probably including my mother’s (I have emailed to get it into the right place).  My friend sorted things out and her father is still in the care home.’  

This is an illustration of why Advance Care Planning (ACP), with the ACP digitally linked to all the urgent care services, is so critical. Not only critical for the patient, but critical for their relatives too.

Many years ago, my sister in law died of a malignant melanoma.  She had four young children, aged five and three years old and new-born twins.  In the April, she was told that there was no further treatment for her.  She died in November of that same year. 

Her goals in life changed to wanting to enjoy quality of life with my brother and her children at home.  She was cared for by two hospitals, a hospice, the district nurses, the community palliative care nurses and her GP.  These are all well-meaning, good people with a high degree of competence.  Yet, in an emergency, when she called for help, the ambulance or GP on call doctor (urgent care services) would arrive and the default was to take her to hospital. 

Why? Because there was not a joined up care plan. Even those services that did have a care plan for her, did not share it with the urgent care services. 

After she died, a group of clinicians in the South Thames London region got together and we created a paper version of a shared urgent care plan.  In time this became digital and when it became pan-London, we called it Co-ordinate My Care (CMC), because that is what it does.

It is a service that helps people to create an individualised care plan, adds the clinical details (including covid status) and then shares it securely and safely with all urgent care services who might be called in a health emergency situation, to manage the patient. 

As time progressed, patients told us they wanted to initiate their plan with their loved ones in the privacy of their own homes.  “myCMC” was thus born of their request.  myCMC is the patient portal that allows patients and their families to go online and complete a questionnaire. 

They are guided through the questionnaire by short explanatory videos.  Once completed. the plan is then automatically sent to their GP, who completes the plan by adding the diagnosis, medications and what to do in an emergency. 

Their doctor or nurse then approves the plan. Once the plan is approved, it is ‘live’ and ready for all the urgent care services – including ambulance and emergency departments at hospitals to view. Everyone is now in the loop to support the patient 24/7. 

There are many advantages of having a “single version of the truth”. The patient is central to the plan and the right care is delivered at the right time and in the right place, and if the patient dies, the bereaved families and friends know that the care chosen by their loved ones was delivered. 

At this time, where families are unable to see their loved ones, having the sense that a discussion about their relative’s wishes and preferences has taken place, provides some closure to bereaved families, who know that the dignity of their loved one’s wishes were respected at the end.

In London, 23,835 care home residents have created CMC plans or a CMC plan has been created in their best interest and to date 14,160 have died.  Of those who have died and have expressed a preference about where they would like to die, 87 per cent achieved it.

To quote Dame Cicely Saunders (noted for her work with the creation of the hospice movement): “How people die remains in the memory of those who live on.” Additionally, if the urgent care services know a patient is covid positive they can also take greater protective measures.

Success factors for Advance Care Plans Digital care plans, created jointly with patient and clinician; 24/7 access for all health and  social carersPatient portal – viewable by next of kin on line; Easy and intuitive to use Robust security and safetyProven, scalable service…

So, if we had a blank sheet of paper for making strategic plans for care homes in a pandemic, what would the plan include? 

  1. Advance Care Plans for residents. The very first place to start planning is engaging with the resident, finding out what they want and preferences of each individual patient are.  This means creating an Advance Care Plan (ACP).  This would include discussions with their families and loved ones.  If the resident lacked ment.al capacity, a discussion with families and their GP might be appropriate. This would then be documented.  To support the ACP, clinical details such as the resident’s diagnosis, treatment plan and medications would be added to the ACP to create a comprehensive urgent care plan.  NICE recommendations to ACP show improved patient and family satisfaction through ACP.
  2. Sharing the plan. The plan needs to be shared with all the urgent care services including 111, out of hours GPs, 999 and hospital emergency departments. GP surgeries are open for approximately one third of the week and when they are closed, for the remaining two thirds of the week, the urgent care services take care of patients. So it is essential that when a call is made for a resident, the resident is not a “stranger” to the urgent care services.
  3. Testing. If you don’t test it, you cannot measure the disease or manage it. Testing should be routinely available to residents and staff.  All suspected and confirmed patients should have a digital alert within their ACP to the urgent care services of the residents covid status. 
  4. Isolation – for residents. Most residents living in care homes have their own rooms. They are ideally placed to be kept in isolation, in their own familiar surroundings, especially for those who have dementia. For those who share bathrooms, PPE for the staff is essential.
  5. Personal Protective Equipment – for staff. The staff has to be protected by using Personal Protective Equipment (PPE). Without staff, the care homes cannot operate. It is crucial that there is not a ‘postcode lottery’ with PPE and infection control in care homes. The development of a more proactive system for managing PPE inventory for care homes and infection control support is an essential requirement, not only for the day to day running, but especially in times like now.
  6. Staff support. I heard last week that one care home in South London that cares for 34 patients is accustomed to having one death a month, but had 14 deaths in seven days. Another in East Midlands has experienced 10 deaths in seven days, which is more than they usually experience in a six month period. A member of staff from the South London care home reported a feeling of post-traumatic stress, stating there had been no time for her staff to grieve the loss of a resident. This would usually be achieved through normal processes such as coming to terms with the expected loss  during a period of the resident’s deterioration, engaging with families at the end of life, and attending funerals. The challenge to care staff in managing outbreaks includes the management of large numbers of deaths in a short period of time, management of new and virulent diseases that they may be unfamiliar with and coping with the sickness of colleagues. All of which may cause considerable distress. There should be “parity of esteem” with the NHS and clear and effective psychological support such as debriefing for frontline care staff. 
  7. Medications. In times of emergencies, availability of medications is crucial.  If, however, an Advance Care Plan has been made, medications can be made available in the care homes in advance for the individual patients. Thus, when the urgent care services are contacted, the appropriate medications are already on site for swift intervention and management of the patient.

In my opinion, the above seven-point strategic plan for care homes is not a huge ask. 

Co-ordinate My Care is an NHS service; it is pan-London.  It is available free of charge to all people who may need urgent care. This includes cancer patients, diabetics, and those with dementia, to name but a few. To date, over 100,000 CMC plans have been created. 

CMC has shown that planned care then enables bespoke care, which can also be delivered in the comfort of homes and care homes.  It is scalable and could be delivered nationwide.  It has a good safety record and clinical outcomes: 40,149 patients with CMC plans have now died, of those who expressed a preference, 74 per cent died in their preferred place – 37 per cent patients died at home, 26 per cent in care homes, 21 per cent in hospital, 15 per cent in hospices and 1 per cent in other places.  

CMC has online real time reporting.  Thus, on a daily basis, data could be seen regarding the number of suspected and proven covid patients in care homes. It also means that some of the increase in deaths seen, that could be due to deaths occurring in care homes which ordinarily would have occurred in a hospital, deaths due to other unmet health needs, or deaths directly due to covid-19 can be recorded, thus giving more accurate transparent data.

As I mentioned, the primary reason for setting up CMC was to co-ordinate care for patients.  It was set up to make the experience of care during the out of hours period, personal, seamless and closer to home, during difficult times. It was never intended to be a money saver, however a health economic analysis showed that it also saves considerable sums for the NHS.  If it were implemented nationally, care would be improved and costs to the NHS would be reduced. 

How difficult would it be to have the above strategic plan implemented for care homes?  Surely now is the time to join up the dots?  Care home residents are at their most vulnerable right now.  Their families and friends are in lockdown and have the time to talk through their wishes and preferences on the telephone, documenting them on myCMC.

The infrastructure for creating ACPs and sharing them digitally with all the urgent care services through the CMC service is a reality. 

In a time where hospital at home services are becoming the norm, is it not time for patients and their families to have the opportunity to have their say, and for every individual nationwide to have a plan? 

It is only with key clinical information, shared with all services including 111, 999, emergency departments and the patients themselves that any hospital at home service can operate. covid has taught us that no one is safe. 

Sharing our wishes and our urgent care plans with those who will care for us in an emergency should be an imperative for all of us, like writing a will.  Creating a national urgent care planning service could be the silver lining of the covid crisis.

The Secretary of State has already promised testing and PPE for care homes will be a priority. He is now talking about hospital at home services.  What remains is an imperative for staff to be supported in the same manner as they are supported if they work within the NHS. And the final part to the jigsaw, is to implement a national digital Advance Care Planning policy where the ACPs are connected to the urgent care services. 

CMC is an NHS service, proven in London and scalable nationally. Implementing a national digital urgent care planning service would give every family the opportunity to become engaged in the decision making process of their loved ones living in care homes. 

All GPs who know their patients well could contribute to the completion and approval of the plans, and all care will be joined up delivering patient centred care, 24/7.

The component parts are deliverable. What are we waiting for?

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Radix is the radical centre think tank. We welcome all contributions which promote system change, challenge established notions and re-imagine our societies. The views expressed here are those of the individual contributor and not necessarily shared by Radix.

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