Learning Disabilities: Health and Social Care Access

Lord Bishop of Newcastle Excerpts

Thursday 26th March 2026 Grand Committee

[The Lord Bishop of Newcastle]

My Lords, I am grateful to the noble Lord, Lord Scriven, for bringing forward this Question for Short Debate. I acknowledge his very personal connection to this topic and echo the words of the noble Baroness, Lady Ramsey of Wall Heath, in paying tribute to his powerful opening speech. I also express gratitude to the organisations that have written to me; I am particularly grateful for the extremely helpful briefing document from Mencap.

The topic of our debate has been on my mind since I sat on the Select Committee in your Lordships’ House as part of the Terminally Ill Adults (End of Life) Bill process. Persistent health inequalities for young people—well, for people generally—living with a learning disability and those with Down syndrome were raised on behalf of the National Down Syndrome Policy Group by Ken Ross, who gave evidence to the Select Committee describing

“a systemic direct and indirect bias shown within the health service, which could also be linked to a lack of understanding of the needs, wishes, health, learning and communication profiles of this particular group”.

The LeDeR report and others highlight that the rate of preventable deaths among those with learning disabilities is double that of the general population; the noble Lord, Lord Scriven, raised the critical matter of the lack of heft with LeDeR.

If we are going to make a real difference to health inequalities, we must focus on not only care delivery but preventive care such as accessible public health campaigns. The report noted that access to care is often missed for practical reasons such as a lack of accessible transport links, which, again, will only be compounded for rural communities. Preventive care that includes the practical must continue to be prioritised by ICBs in their strategies to reduce health inequalities.

As the Covid inquiry has continued, we have seen in close detail the impact of inappropriate application of DNACPRs, sometimes on those with learning disabilities. Fear and distrust of the health service for disabled people remains. In some places, that is worsened by geography. There are additional challenges of accessing care if living rurally—a particular feature of the area where I serve as Bishop, which includes Northumberland. This is about accessing the right care at the right time and with the appropriate reasonable adjustments in place.

On the availability of reasonable adjustments, the most recent LeDeR highlights that the involvement of a learning disability liaison nurse in someone’s interaction with the healthcare service is correlated with a higher likelihood of reasonable adjustments to care. It also says that access to learning disability liaison nurses is not straightforward in all parts of the country and they are less commonly available in the north-east.

We are living in an uncertain health and care landscape, and in the midst of significant reforms to the healthcare service and impending significant reforms to adult social care services. ICBs were asked to make 50% cuts to their running costs last year and, to meet this, many have made arrangements to merge and expand their geographical footprint. None of these agreements, to my knowledge, has been made in the north-east, but those ICBs will still have been required to make cuts. What then will the impact be of ICB cuts on the important measures to ensure patients have access to the reasonable adjustments they need? What support is being provided to ICBs to ensure that essential services like this are protected from cuts?

As we await the outcome of the Casey commission on adult social care, which promises significant reform, we know the huge pressure facing council budgets. Services such as Shared Lives, run by councils, are extremely beneficial, especially for those living with a learning disability. According to a survey carried out by the Association of Directors of Adult Social Services, 87% of its membership think that

“greater availability of Shared Lives would reduce or significantly reduce adult social care expenditure”.

Although this debate is not about the provision of social care per se, if care and support are the means by which we are all enabled to flourish, they are part of the discussion about ensuring reasonable adjustments to healthcare and good decision-making for patients.

In conclusion, overall, the problems are systemic, requiring stronger leadership, better designed services, collaborative thinking, improved training and consistent, proactive approaches to ensure equitable access to care.