The (in)accuracy of the ‘learning disability register’.

There is understatement, and then there is a ministerial statement on ‘the learning disability register’ in a Lords debate yesterday.

Arriving at a headcount of people with a learning disability in the UK, or in the constituent nations, is no simple matter. But it’s not made easier, when sets of data are held by  various  NHS departments , Social Service departments, the Department for Education and The Department for Work and Pensions. Ironically the most incomplete set of statistics is probably held by GPs and CCGs.

We have commented elsewhere on the scandal of people with learning disabilities not being invited by GPs to the annual health checks – to which they are entitled.  And Public Health England’s ability to plan has in the past been  frustrated by the incompleteness of data provided by those whom you would expect to know the most, CCGs and GPs.

Many in the media reacted to government press releases yesterday as if the ‘learning disability register’ was comprehensive and accurate. Some of us  know otherwise. Baroness Hollins certainly does, and the Minister admitted: “We have to work with what we have. The existing register, while not perfect, is the tool that we have for our task”.

Note also the question and reply re the vaccination of family carers and home carers.


Baroness Hollins, Crossbench : “My Lords, I welcome today’s announcement that all people with a learning disability on their GP learning disability register will now be included in group 6. However, we know that these registers are incomplete. How will the Government and the NHS ensure that those in England not currently on the register can be added so that they can be offered a vaccine too? Will the Minister confirm that family carers and home carers will be offered vaccination at the same time?”



Parliamentary Under-Secretary for Health and Social Care: We have to work with what we have. The existing register, while not perfect, is the tool that we have for our task. GPs had been encouraged to update registers in advance of the vaccine, as we had several months of knowing that it was coming. I understand that considerable work has gone into that. With regard to carers, my understanding is that they are not currently included in the clarification that came out today, but I am happy to confirm that point with her.