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Uncounted is unseen!

Has the time come to collect more official data on ageing without children?

Mapping informal carers and their support needs has rightly become a key priority for health and social care in recent years. However, equivalent information about access to informal care, including where there is none, has lagged behind.

Today’s NHS aims to deliver better health outcomes and patient satisfaction at lower cost by shifting services to the community level. A totemic example is the introduction of “virtual wards”, also known as “hospital at home”. At the same time, acute hospitals seek to make better use of beds by speeding up discharge for those clinically ready to leave. Data on access to informal care is vital to deliver these changes, but it is apparently not gathered systemically at a local level or in ways that allow effective analysis. Without change, there is a real risk that people lacking informal care do not receive the same quality of care as those with family support, and that projections of public money saved will not be achieved in practice.

For example, the census question identifying unpaid carers was first asked in 2001 but there are still no census questions about the location(s) of their care recipient or about whether an individual is a recipient of unpaid care. Past census questions also fail to provide insights on the number of childless men (although separate ONS birth records provide this for women), whether residency patterns vary between those with adult children and without, geographical dispersal of families, levels of estrangement from adult children including for divorced fathers, or numbers whose children live overseas, have predeceased them or are unable to care due to additional needs.

In late 2022, NHS England issued guidance to GP practices on the use of specific SNOMED CT classification codes to identify carers but there seems to be no equivalent guidance on access to informal care even though appropriate SNOMED CT codes exist for this too.

These gaps in data provision mean that the NHS and other public agencies can tell with great accuracy the number in their catchment area of older people, those with restricted ability to undertake activities of daily living and those who identify as carers but not the numbers with no access to such care and their typical characteristics, or the proportion of carers supporting people living many miles away.

Initiatives such as the Kent and Medway Care Record (KMCR) are a welcome move. The KMCR will include information on “people that care for you and who know you well” and “basic details about associated people, eg. your children, partner, carers, relatives, etc.” but it is not clear how this will be recorded systematically and consistently or in a way that allows planning of effective support. Or that the language used will be inclusive of those ageing without children or other informal care – the continuing use of the confusing term “Next of Kin” on many NHS forms suggests that it may not.

It is positive that the growing number of people ageing without children is starting to be recognised in academic and other research on health and social care. The 2020 Office for National Statistics report “Living longer: implications of childlessness among tomorrow’s older population” drew on data from the 2018 Health Survey for England and the English Longitudinal Study of Ageing, Wave 8 (2016-2017). The government’s May 2023 response to recommendations on ageing without children in the recent House of Lords Adult Social Care Committee report acknowledged “the need to better understand the impact of an individual’s parental status on their experience with care, and future demand” and said “The government also agrees that it is crucial to understand the specific care needs of people ageing without children.” It highlighted that the National Institute for Health and Care Research (NIHR) was commissioning a Healthy Ageing Policy Research Unit whose remit included the specific needs of older people who are ageing without children and committed that the government would work with successful applicants to “consider what further research in this area is appropriate”.

Now is the time to ensure that this academic research is complemented by effective data for personalised support and local health and social care planning.

The National Statistician is due to make recommendations this year on whether a 2031 Census should be held or there should be greater reliance instead on administrative records. The NHS is progressing new ways of working to reduce health inequalities and deliver more efficient support, including through a focus on data. It is therefore a key time to consider what comprehensive official data is needed on the critical issue of ageing without children and other informal care and how this should be structured and sourced. Participation and involvement of people ageing without children is a vital component in how this is done to ensure not only that data is gathered but that it is appropriate, inclusive and fit for the future.

So what are the best next steps? I would suggest four.

Firstly, initiatives like the Kent and Medway Care Record should ensure that people ageing without children are active participants in its data design.

Secondly, virtual ward projects should include a particular focus on data on access to informal care, including appropriate use of SNOMED CT codes. They should then monitor inequalities in delivery, patient satisfaction and health outcomes between those with and without informal care. This data should also be used to inform the widely shared concern about how these services can be designed and resourced to avoid unacceptable strain on unpaid carers.

At a national level, NHS England should consider issuing guidance, equivalent to that on SNOMED CT codes for carers, about gathering data on ageing without children and access to informal care. It should include the participation of people ageing without children in this process and consider what further research, if any, is needed to inform its deliberations.

Finally, the National Statistician should consider ageing without children and access to informal care, as well as the impact of distance on how families deliver care, in developing his recommendations on the 2031 Census.

As service delivery in health and social care evolves and improves, it is essential that better data is captured on the needs, characteristics and experiences of the growing numbers who are ageing without children.

Penny Shepherd

Penny Shepherd MBE is co-founder of the AWOC East Kent local group and a former IBM data specialist.

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