Yorkshire Times
A Voice of the Free Press
The Secret Carer
Features Writer
5:19 PM 23rd January 2021

Vaccination Injustice For Unpaid/Parent Carers And Those With Learning Disabilities

When I started writing as The Secret Carer a year ago, my purpose was twofold: firstly, to represent and share the life of a full-time unpaid carer and what we go through on a daily basis; and secondly to advocate for the most vulnerable in society. My son is one of those vulnerable people: the medically and intellectually disabled who do not have a voice and are unable to represent themselves. For this reason, I have become increasingly troubled by the JCVI’s (Joint Committee on Vaccination and Immunisation) Covid-19 vaccine prioritisation programme Covid-19 vaccine prioritisation programme.

Recently I have had a lot of opportunity to put my thoughts down on paper. My son’s frequent tonic-clonic seizures and subsequent Buccolam-induced sleep mean that I have had more time to think. This morning’s seizure was particularly aggressive and my son’s blood oxygen saturation level dropped dramatically for a minute or so - going as low as 20 (mm Hg) at one point - and his heart rate went up beyond 160 (bpm). My son was extremely pale and had a lot of fluid in his throat. Fortunately, we have a gap of around thirty seconds between periods of shaking where we can readjust his position in an attempt to clear his airway. After that, we just have to wait an agonising few minutes to see if the seizure stops on its own and, if not, administering his buccal midazolam to halt it. Then it’s a matter of monitoring his breathing for the next few hours while he sleeps and recovers. Job done... and onto the next one in a week’s time or sometimes sooner. I can sound blasé about this because sometimes it is the only way to cope with seeing your child suffer week in week out, most likely for the rest of his life. If I thought about it too deeply it would destroy me.

So here I am yet again sitting next to my midazolam-induced heavily sleeping son, monitoring his sats, currently now rising above 90 (mm Hg) and his heart rate reducing to 124bpm (often it can take several hours to return to a heart rate of 80 bpm). The amazing Daisy Garland Trust donated our Pulse Oximeter machine and I can say without a doubt it has been invaluable. In the early days my son would have had to go to the Emergency Department of our local Hospital to monitor his vital signs (and on some occasions still does), but we are old hands at it now, with experience gained over a long period of time.

A great majority of unpaid carers have acquired a similar and often higher level of medical expertise and, in practical terms, they save the NHS hundreds of millions of pounds a year. Furthermore, during the Covid pandemic they have been indirectly supporting a stretched NHS by also effectively shielding their vulnerable loved ones. These carers should be valued and recognised for what they do and certainly should not have to campaign to be raised up to priority level 6 of the Covid vaccination programme. In fact, they should be near the top of the list, up there with our paid respite carers at Level 2.

For us, my biggest fear is that if I and my husband catch Covid-19 then who will look after our clinically vulnerable and learning disabled son? Our respite carer provides help for several hours a week, but looking after my son for 24 hours a day is a skilled two person job. In our absence you would certainly need two respite carers and they would need epilepsy awareness and Buccolam training, an understanding of the numerous types of seizures (including hundreds of smaller seizures a day), the likely triggers that bring them on, the signs of one beginning to happen and the confidence and experience to deal with them any time and anywhere. And that isn’t factoring in his learning disability with its autistic traits, sensory issues, mental health problems and challenging behaviour. If we, his primary carers, catch Covid-19 the burden is back on the NHS and Social Care to step in and provide care for our son - organisations which are already stretched to the point of exhaustion and collapse.

Alternatively, if my son catches Covid-19 he is clinically vulnerable and at far higher risk than others his age. A high temperature can and will bring on epileptic brain activity, with numerous back-to-back seizures or even status epilepticus - his life is in danger. Would we be able to accompany him during a stay in hospital? Probably not, so yet another burden on NHS staff. I cannot imagine how he would cope emotionally and behaviourally without us being there with him and it would break my heart to do so.

If you look after a clinically vulnerable and/or learning-disabled adult or child you need, now more than ever, to be completing a healthcare passport for them, also known as a hospital passport. This is a document about your child whilst in hospital which includes not just their health needs but also what they do and don’t like, how to communicate with them, and any reasonable adjustments that are needed to support them. Templates are available online from the NHS using this link ‘Get Me? Get Me Better’ Hospital passport
Many charities also provide online templates

So where are we (unpaid parent carers) and our learning disabled son with his rare intractable epilepsy placed within the JCVI Covid-19 vaccination programme ? – an astonishing Priority Level 6.

The Carers

You might ask why this is so low? But, actually, unpaid carers have only just been moved up to Level 6 thanks to the campaigning efforts of Contact, Mencap and several other charities. Before that, they were not in the high priority list at all. Those with Down’s syndrome are now classed as extremely clinically vulnerable and have also now been moved up to Level 4. To me this demonstrates just how little understanding the JCVI had and still has of those with a physical and intellectual disability and even more starkly any understanding of the critical role that carers have been playing during this pandemic. Let me explain…

Unpaid carers – Priority level 6 (this includes parent carers, but also those caring for the elderly and infirm, for instance).

A large number of unpaid and parent carers have been shielding vulnerable loved ones for almost a year now. It has been extremely difficult logistically, physically and emotionally (particularly from a mental health perspective). We have been ground down by long hours and the lack of respite. I speak from experience as during the summer my husband had to give up full time employment to help me care for my son and continues to do so. I have also written about a mother who was single-handedly caring for her learning-disabled son throughout Lockdown, but by the summer couldn’t cope anymore, resulting in tragic consequences (‘Please Don’t give up’). There are 6.5 million carers in this country according to Carers UK, many of whom are still shielding vulnerable children and adults to the best of their ability. If they catch Covid, then those they care for may also fall ill. You then have double the number of casualties, perhaps more, particularly if you factor in other family members and siblings, so creating a further burden on an already stretched NHS.

Carers, if you aren’t already registered with your local GP practice as a carer, please contact them to let them know that you are a carer and fill out the registration form. This will then be flagged up on your medical records, otherwise you may not be called for a vaccination at the appropriate time

Paid Carers – Priority Level 2 this includes respite carers, social care workers, outreach, care home workers etc.

Our son’s respite carer is being vaccinated today, she is in level 2 of the vaccination programme. She does several hours a week for us and only us (she is in our bubble and is invaluable). Our other carer has also been vaccinated but we cannot use her because she cares for several other people throughout the week and this is too great a risk for us. You might well ask why we aren’t using her now that she is vaccinated? Well, the vaccine may significantly reduce the risk of you getting a serious case of Covid 19 but research has not yet shown whether it prevents you from getting or spreading the virus. If you are going to vaccinate carers, do that first; but surely you should also vaccinate those vulnerable people that they care for soon afterwards, otherwise vaccinated carers with very mild or asymptomatic Covid could unknowingly transmit the virus to the very people they are trying to help.

Special school staff - Priority Level ? – not yet assigned

I want to make special mention of the amazing group of carers that are the staff in special schools. I can say without a doubt that it is impossible to be able to socially distance from a learning-disabled child. I have spoken about the logistics of this in more detail in ‘I am Trapped’. Only a day ago my son rushed out of our car at school before we had time to put a mask on him and straight over to his teaching assistant who hadn’t spotted his arrival and hence had no time to put on her mask. He gave her the biggest hug and she accepted his actions without pulling away. Close contact is happening all day at school for these teachers, and they have to make decisions that put them at great risk. Their job also includes similar duties to that of a respite carer, only they are potentially exposed for 6 hours a day, 5 days a week. The Department of Education has only recently released information on the impact of Covid-19 on their workforce which shows that teachers working in a special school are twice as likely - and in the case of teaching assistants, almost seven times more likely - to catch Covid-19 compared with the general population. We must get these carers moved into the priority list and vaccinated immediately.


Clinically/Medically Vulnerable – Priority Level 4 & 6

According to the JCVI those in Priority Level 4 must be ‘clinically extremely vulnerable individuals’ who have been asked to shield during the present Lockdown. Those in Level six must be ‘individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality’. My son’s intractable epilepsy condition would put him into Priority Level 6, however a report from the Learning Disabilities Mortality Review (LeDeR) Programme states that “at present, given the findings it would seem appropriate to consider people with learning disabilities and epilepsy as being at increased risk of death from the virus” and they recommend “paying particular attention to protecting them”.

There is growing concern whether all those who qualify within these priority levels will be recognised and notified when it is their turn to be vaccinated. During the first Lockdown many didn’t receive shielding letters from their GPs, and this again appears to have been a subjective opinion by your clinician. In my son’s case, his regional Neurology Consultant was shocked to hear he hadn’t received one three months into Lockdown and immediately produced one for him. Can we expect our already overworked primary health and care providers (who are now also an essential part of the vaccination programme) to be able to consult everyone’s medical records to establish the distinction between ‘extremely clinically vulnerable’ and ‘underlying conditions which put them at a higher risk’? It’s a difficult distinction for anyone to make at the best of times, let alone when working through every person’s records.

The Learning (or Intellectually) Disabled – priority level 6 and priority level ? – not yet assigned

Did you know that there are 1.5 million people with a learning (or intellectual) disability in the UK (Mencap). An interesting article from ‘BMJ opinion’ outlines “that Public Health England found that between the ages of 18-34 the death rate of people with ID from Covid -19 was 30 times higher than for people in the same group without a disability. In addition the overall death rate for people with intellectual disability was estimated to be up to 6.3 times higher than the general population”.

This official report suggests that this group is extremely vulnerable - so where are they in the vaccination ranking? Priority level 6 for severe and profound learning disabled and, for those with moderate to mild learning disabilities, they are still awaiting a designation. This is shocking. Those who have mild and moderate learning disabilities are just as likely to die from Covid as those who are severe and profound. JCVI says that prioritisation should ‘maximise benefit and reduce harm’ and ‘mitigate health inequalities’ yet clearly not all people with learning difficulties have been prioritised. During the Government Press Briefing on Monday 18th Jan, the Health Secretary, Matt Hancock kept repeating that they were prioritising the most vulnerable - - this is simply not true. Here yet again is an indication of the health inequalities for learning disabled people during this pandemic and in everyday life. Let’s not forget that in the first Lockdown many were also subject to DNR orders.

Bizarrely, the JCVI has defined the learning-disabled on the basis of their severity, which I would say is a dangerously misleading and extremely subjective practice. My son is learning-disabled but his consultant will not define him as ‘severely’ learning-disabled. She says that a learning disability already puts him in the lowest 1% in the country, which I think by anyone’s reckoning would be classed as ‘severe’. Even before the pandemic, attempting to diagnose levels for a learning disability were very subjective and open to debate. For example, when my son’s condition is stable he is more capable than when he is having periods of regression. I doubt this level of detail will be outlined on every person’s medical notes.

So why is there a distinction here? Whatever the level of learning disability, the learning-disabled will find it difficult to understand the guidelines for hand washing, social distancing, when and where to wear a face covering or the reasons for doing so. By nature of their learning disability they will unintentionally be putting themselves and others at risk. Many also find it difficult to recognise and verbalise if they are in pain, or able to indicate where that pain is. Do we really believe they will be immediately aware of a change in smell or taste, or a sore throat, fatigue, muscle or body aches and headache - some of the early symptoms associated with a Covid -19 infection – or be able to tell someone if they do? More worryingly, many learning-disabled may not be able to express or understand whether their condition is deteriorating.

Additionally, those with learning disabilities are spread throughout the community. Some manage to live independently in the community with help from carers, others are in assisted or supported living settings with respite staff who, even with the advantage of a Covid 19 vaccination, may still be able to spread the virus - they often have to move from one setting to the next. Others are completely dependent on community living and rely on care home staff. The potential for viral transmission here is great. Whatever the severity of their learning disability, they are vulnerable, need to be treated as such and should be prioritised accordingly.

A further concern outlined by BMJ Opinion is “that identifying people with a severe or profound intellectual disability within primary care is not a straightforward task. Only around 200,000 of the 1.5 million with intellectual disability appear on existing GP registers. From this a GP will then have to identify a further 20,000 with severe profound ID within this group”. This is a time-consuming task for an already overstretched primary healthcare service. In our son’s case we just have ‘learning disability’ on his records with no distinction of what level. To find his specific level you would have to contact CAMHS and a different clinical commissioning group to his GP Practice who currently are not able to share personal records digitally. Surely it is more effective, more caring - as well as less time-consuming - to place all learning-disabled into the same category of risk and, hence, vaccination priority?

Write to your local GP and remind them of your learning-disabled adult or child’s level of learning disability or vulnerable status. If necessary, discuss this with the GP in person and if there is any resistance get a letter from your regional centre or consultant to back you up. Do your best to ensure there is no possibility of being overlooked

Throughout the last year the health inequalities of the Intellectually Disabled have become increasingly apparent. In response to the LeDeR Report NHS England and NHS Improvement have published a summary of the many actions that they have taken or intend to take on behalf of the learning disabled ( Voiceability Nov 2020). Firstly, they need to give the learning disabled a higher priority for Covid vaccinations. Also, regular asymptomatic testing should be instituted for all learning-disabled people and support staff, not just in residential care settings, and this should be extended to family carers. Further intensive support is recommended for GPs to identify ALL the patients who have a learning disability so they can provide extra support. There are several more recommendations which can be viewed here). These measures will take time to implement, and that is something the learning disabled currently do not have: we have to act on their behalf now (See petitions below).

You cannot deny that our country is one of best practitioners at ‘waiting in a queue’ whether at a supermarket, bus stop or currently for Covid vaccinations. But there is an injustice here.

I have struggled with the JCVI prioritisation of the Covid 19 vaccination and continue to question their rationale. To my mind, surely you vaccinate first those who are putting themselves at the greatest risk, such as frontline health and care workers, emergency services etc. - and this should include unpaid carers. These are all people who are essential to our community and they have specialist skills which cannot easily be replaced. You then look to the most vulnerable, those who need to be cared for and cannot do so for themselves, either medically or intellectually.

If you protect the vulnerable and their carers, and do it early enough, you will also protect the NHS and Social Care from further becoming overwhelmed later in the year. Leave them as a lower priority and there will be more unnecessary deaths and ultimately you may face a further spike in numbers in a few months’ time. Please don’t let this happen. Respect the vital role that our carers are playing in this pandemic and also the unending care and dedication that they give to the more vulnerable in society and support them throughout this critical situation. Also let us acknowledge and protect all those who are clinically vulnerable and learning disabled with an early vaccination, even if it means waiting several weeks longer for your own vaccination. Research indicates that this section of the population have been subject to health inequalities throughout this pandemic and now it is time to acknowledge that their life is as precious, important and valued as everyone else’s.

If you wish to take positive action please contact your local MP and/or sign any of the petitions below, we need over 100,000 signatures to get them debated in Parliament. There are 1.5 million learning-disabled in the country and 6.5 million carers, please encourage anyone who might benefit from the issues outlined below to sign these petitions and help us make a difference. It takes less than a minute to give your name, email address and postcode, and a further click to confirm…Thankyou.
Prioritise special school staff in Covid 19 vaccinations
Prioritise vaccinations for people with a learning disability
Prioritise carers of vulnerable people to receive a Covid vaccine when available