Very severe disability and clinically extremely vulnerable but still no offer of a vaccine

Call 1
I knew this was going to be a nightmare.  My severely disabled child, turned 16 two days after the 'deadline' for getting the clinically extremely vulnerable vaccinated. So, I was happy to speak for getting onto an hour to the lovely pharmacist who is based at my GP surgery.  This was about a month ago.

The pharmacist was unable to help.

Call 2
Last week we spoke to the vaccination co-ordinator at the surgery, she told us that all she did was book the appointments.

Call 3
Today I spoke to the nurse at the surgery.  I was told that there was no way we could get a vaccine at home as this was only for people who NEVER left the house.

So, I ended up in a very familiar place - I checked the 'guidance'.

Call 4
...and having done so, I called the nurse back, but they don't work afternoons on a Monday and aren't back until Wednesday.  Apparently there is NO ONE else I could talk to.  I asked for the practice manager.  They are yet to call back.

Link to guidance: C1124-vaccination-cohorts-5-6-additional-funding-residential-settings.pdf (england.nhs.uk)

Annex A: COVID-19 Vaccination of Children and Young People (CYP) in the Clinically Extremely Vulnerable (CEV) Group In January, a letter was issued to all CEV patients from the Department of Health and Social Care, informing them that they would be invited to have a vaccine. As we are now offering vaccinations to those who are clinically extremely vulnerable, it is important that parents of children on the CEV list, as well as clinicians, are clear on the clinical policy for vaccinating children against COVID-19. All CEV children have been included on the shielding list following a mandatory assessment by a paediatrician, based on the criteria published by the Royal College of Paediatrics and Child Health (RCPCH) which can be seen here. Children included on the CEV list fall broadly into the following two categories: • Group A - mainly immunodeficiency or with types of cancer; • Group B – range of other conditions thought to put them at risk e.g. cardiology, neurology, respiratory etc. The independent Joint Committee for Vaccination and Immunisation and Public Health England’s Green Book are clear that the majority of children should not be vaccinated at this time, on the basis of a low morbidity/mortality risk from COVID-19 infection; limited safety data; and overall uncertainty regarding efficacy.

CEV aged 16 to 18+ years
The Astra Zeneca vaccine is authorised for patients aged over 18 years and Pfizer BioNtech vaccine for those over 16 years.

The AZ vaccine would need to be authorised for all CYP by a prescriber (doctor) as it is “off licence”. Pfizer can be administered under PGD or national protocol for CYP aged from 16 years, but to prescribe it for those below this age would be off licence. The Green Book states that either vaccine can be used. It is recommended that the Pfizer vaccine be the vaccination of choice for CYP as it is authorised for those over the age of 16 years. Pfizer is not currently available at Vaccination Centres, therefore CYP would be vaccinated in Hospital Hubs or at PCN sites.

The following approach should now be actioned for those children and young people who have severe neuro-disabilities and who tend to get recurrent respiratory tract infections and who frequently spend time in specialised residential care settings:
1. From age 16-18 years called to PCN for administration of Pfizer. This is on licence.
2. From age 12-16 years called to PCN for administration of Pfizer. This will be off licence and discussions with RCGP indicates that GPs should seek advice from the patient’s paediatrician prior to administration.
3. Aged less than 12 years, not called for vaccination.

Given that my child has severe brain damage and complex needs as we have been told to shield until 31st March and he's already had multiple spells on life support, you would have thought that he would be eligible for the vaccine.

Link to guidance: Letter template (england.nhs.uk)

Some patients will need to receive their COVID-19 vaccinations at home because they are housebound, i.e. they are unable to leave their home at all or require significant assistance to leave the house due to illness, frailty, surgery, mental ill health or nearing end of life. In light of this, we are providing: An additional supplement of £10 per visit to a housebound patient in order to administer the COVID-19 vaccinations. This supplement is on top of the £12.58 Item of Service fee. If a PCN grouping or community pharmacy contractor administers vaccinations to a housebound patient at the same time as vaccinating other members of the household who are currently eligible for vaccination, only one £10 supplement per visit can be claimed. The £10 supplement applies retrospectively to any first dose vaccinations that have taken place since 14 December 2020 in line with the above criteria, and will also apply to second dose vaccinations that take place in line with these arrangements.


Given that my child requires the support of 2 carers and that one of his parent carers is ALSO on the shielded person list, you would have thought that he would have qualified.

Not that we have given up of course.  We have

1. Emailed, texted and spoken to his paediatrician who believe that he should have the vaccine
2. We have contacted Cllr Brabazon, who is particularly passionate about SEND issues in Haringey
3. We have tweeted (in exasperation) 
4. And now we have a blog...
5. We have submitted questions to the local director of public health
6. We have signed up for the Bridge Renewal Trusts Vaccination Event