Dear Cabinet Secretary…

Jeane Freeman MSP, Cabinet Secretary for Health and Sport, The Scottish Government

5^th December 2020

Dear Cabinet Secretary,

We thought you were giving us the ultimate Christmas present. You let us down.

Allow me to introduce myself. I am an unpaid carer for my seven-year-old little boy, Benjamin, a cheerful, gentle little boy who happens to require round-the-clock medical care for his complex needs. His needs include overnight ventilation, frequent deep suctioning of the respiratory tract, tube-feeding via a gastro-jejunostomy, and management of complex epilepsy. Benjamin has two sisters, aged four and eight, and we are a close family who want nothing more than to be together.

At the start of the covid-19 pandemic, Benjamin was placed on the shielding list. As it is impossible for a young child requiring full personal care to effectively maintain two-metre distance from others, and as it was also unreasonable to expect Benjamin’s loving sisters to refrain from hugging, kissing and playing with their brother, we effectively had to shield as a family. We were happy to do this to protect our son. We removed all three children from school on March 16^th, and only left our house and garden for essential shopping, medical appointments, hospital admissions and occasional, isolated periods of exercise. We stopped our wonderful personal assistants from coming in morning and evening. We washed all our perishable shopping and stored the rest for 72 hours before use (will still do!). As a result, we were relieved to stay infection-free.

At the beginning of August, we were advised that Benjamin no longer needed to shield. Having followed the changing science, we agreed with this judgement and, with some understandable trepidation, allowed all our children to return to school with their peers—because this was vital for their social and emotional wellbeing as well as their educational progress. However, since Benjamin remains vulnerable, if no longer “clinically extremely vulnerable,” we have continued to minimise all interaction with others excepting essential school and medical appointments. We attempted to balance the essential risk we were taking in sending the children to school, by avoiding all interaction with people outside of that school bubble—no gym visits, public transport, socially-distanced coffees with a friend for us. No outdoor reunions with our grandparents, nieces and nephews. No going anywhere indoors with other adults if we could help it.

You see, throughout the pandemic we have become increasingly aware of the risks covid-19 poses, not just to our son’s health, but to our ability to care for him and thereby keep our family together. Should myself and my husband become incapacitated for a few days or weeks by covid-19, or (this doesn’t bear thinking about) months or years by “long-covid,” there is no “Plan B” for our son.

We have no friends or family trained to meet all his needs (even if they could come into a covid-infected household to do so). For instance when Benjamin is in hospital, one of us has to stay with him 24/7 to care for him and ensure that his treatment is appropriate, because his needs are unique, complex and multi-faceted and we are the only experts who can see the whole picture. Our social worker had no answer to the conundrum of “what happens if the worst happens” and we are not alone. Hundreds of families across Scotland with children with exceptional healthcare needs face the same situation; as, I’m sure, do many more carers of partners or parents. The people we care for depend upon us and us alone. The partner, son or daughter caring for someone with dementia may be the only person from whom they will accept instructions, the only person that knows exactly how they need so many facets of their life to be, to keep them happy and keep them safe. The parent-carer of a child with medically complex needs may be the only person who knows what is normal in their heart rate or breathing pattern, in their bowel habits, in their skin colour, and what is dangerously not normal.

The blunt truth is that, were myself and my husband to contract covid-19, our son would have to go into hospital or a hospice (our nearest children’s hospice is over an hour away, in Perth and Kinross). Let me say that again. Our seven-year-old, severely disabled boy would have to go, alone, into hospital or a hospice, potentially for weeks, when he is not himself in need of hospital care. He would have no understanding of why he had been sent away. He would miss his family terribly—as we would miss him. It is highly likely he would actually become sick, due to the absence of carers knowledgeable of his unique needs. Few people can understand anything he tries to communicate, be that happiness, interest, or pain. He cannot use a telephone. He is visually impaired and cannot identify individuals on a video. He needs close and loving touch from his close and loving family every. single. day.

When you multiply this situation by the number of people who could be affected if Scotland’s c. 700,000 unpaid carers are unable to care, the costs to the NHS and the blocking of bedspaces at such a critical time are also not inconsiderable.

Thus, as I’m sure you can imagine, we have been only too willing—even our four- and eight-year-old daughters have been gracious to a fault—to make personal sacrifices to keep ourselves safe from covid-19 and, above all, to keep our family together.

But it has been hard. As one parent-carer was quoted in Kindred’s recent report, during lockdown there was “no break from it at all. No carers, no respite, no school. It’s relentless. My child usually has 2:1 care at school and now I am supposed to care, teach, and do his therapies all while working from home and giving my other two children some attention. It’s impossible.”

So, I’m also sure you can imagine how enormously relieved we were to hear you say in the Scottish Parliament less than three weeks ago (19^th November), that unpaid carers would be included in the “first wave” of vaccinations, between December 2020 and February 2021. Enormously relieved. By March at latest, we would be able to allow our children to join their friends at (outdoor) birthday parties; we might snatch a sneaky pint in a pub garden; we could hug our parents, play with our nieces and nephews; hell, we could even put our shopping in the cupboard without dousing it first in Dettol.

We discussed what to do for Christmas, in the light of the relaxation of rules. We decided that, since we had come so far and there really was an end in sight, we would continue to be careful just that little bit longer. We agreed not to take the risk of seeing our children’s grandparents, although it was within guidelines, in the knowledge that by Easter we could do just that in safety. We could see that we only had a little longer to hang on. Which, by the last of our fingernails, we are doing.

On 3^rd December, a tiny alarm bell started ringing in my head when I heard you state to the Scottish Parliament that, alongside those most vulnerable on an age and health basis, the “only sectoral exception [for vaccine priority] is for the health and social care workforce.” It must have been an oversight. You must have meant to include unpaid carers in that “workforce.” Yes?

Then yesterday, 4^th December, it all became shockingly clear in a “Vaccine stakeholder note” from the Scottish Government Directorate for Mental Health and Social Care.

“Carers and families are not included in the prioritisation list.”

I’m sorry, What?

Can you imagine the disappointment?

You gave us a lifeline and you pulled it in before we had a chance to grab hold.

Have you thought about the mental health implications of that? Of carers close to burnout before covid-19 even struck, closer still after months of isolation without respite, being lifted up, and then brought crashing down.

You can argue the toss about whether unpaid carers qualify as “keyworkers” in all but salary. You can ignore the £11 billion we save the Scottish Government every year. You can discuss whether the care we provide for our loved ones is—physically and emotionally—irreplaceable.

But you can’t argue—it’s there in the parliamentary record—that you made a commitment to us and you let us down.

Disabled people, their families and carers have been overlooked, side-lined and discriminated against throughout this pandemic. From the “it only affects the vulnerable” rhetoric of early 2020, to the failure to provide PPE for carers, to the closure of essential respite services, to the refusal to allow many of our children to return to school because they require aerosol generating procedures, to the cluttering of pavements with outdoor seating areas and the blocking of disabled parking spaces to make “spaces for people.” You almost have to laugh.

On 19^th November, we didn’t laugh: we cheered, we celebrated, we called each other up and cried tears of pure relief. We thought we were no longer overlooked.

In fact, we are not just overlooked. We were cruelly misled. You got our hopes up and you dashed them.

I don’t know why you have reneged on your commitment. Perhaps there is not enough vaccine for all those who need it urgently and someone has to draw the short straw? But you knew how much vaccine would be available, and roughly when, on November 19^th. I think it’s more likely you are being played for a pawn in Mr Johnson’s “four nation” scenario. England’s carers are not to get the vaccine, so neither must Scotland’s. Is this the right response? Wouldn’t it be better, braver, more honourable, to stand alongside the carers of our other three nations and fight with them for what they also need? For a need you, three short weeks ago, recognised. This doesn’t have to be political—it has to be about doing the right thing by a vulnerable group.

We’re not asking to be first. We, of all people, know that the elderly, clinically vulnerable and healthcare workers must be the first priority. We’re not asking to be first. We’re just asking not to be last. Not to be in with that final category “rest of the population.” We’re asking you to honour your promise.

Wishing you a wonderful Christmas, however you choose to spend it.

Alex

UPDATE: On the evening of 9th December, the Scottish Government issued a correction to their letter of 4th December. They agreed that they were incorrect to state that parents and carers were not on the priority list, and expressed regret that they may have caused additional and unnecessary anxiety. The UK-wide JCVI advice has been updated to include adult carers in priority group 6, alongside adults aged 16-64 with underlying health conditions.