Supporting People with Long Term Conditions (Wales) - consultation response

In May 2023 we responded to this Welsh Government consultation, which looked NHS and social care services, multiple conditions, impact of additional fears, prevention and lifestyle. We welcomed this consultation.

Our response

We agree with the Committee that issues around chronic conditions are wide ranging and complex. With this in mind, we sought to identify a small number of key considerations that we hope will help inform the Committee’s thinking and understanding of the issues around long-term conditions in children and young people, rather than take an in-depth look at specific conditions and care pathways.

We aligned these as far as possible to the broad areas identified by the Committee on the consultation page.

Our recommendations

Prioritising children and young people is essential to ensure that services can meet future demand

  • In years gone by, the majority of deaths in children were in those acutely unwell from infectious disease with no underlying morbidities. The number of children with a single long-term health condition such as asthma, diabetes, inflammatory bowel disease, eczema and epilepsy has increased significantly in more recent years. Now, between 60% and 70% of children who die in the UK have a long term condition.
  • There is therefore a strong case for prioritising children and young people in formulating policy, resourcing and services around long term illness, including the long term implications for health services.
  • Given the impact that living with a chronic illness during childhood has on school attendance, health in adulthood and on a person’s lifetime opportunities, we strongly believe that prioritising children and young people is key to ensuring that services can meet future demand.
  • We encourage the Committee to consider hearing directly from children and families living with long term conditions and to look at resources we have produced with our engagement network, RCPCH &Us.
  • Over the past two years we have seen significant increases in waiting lists to access general paediatric services and in particular in waits of over 36 weeks. We would like to see delivery and implementation of existing workforce plans in Wales, which must be properly resourced and funded; and enable proactive planning and modelling based on robust workforce data, in line with commitments made in ‘Healthier Wales: Our Workforce Strategy for Health and Social Care’ and ‘Our Programme for Transforming and Modernising Planned Care and Reducing Waiting Lists in Wales’.
  • Finally, we must also ensure that services work together. This is not only across education and social care but also between paediatric and adult care to ensure the needs of adolescents and young adults are met. This population consistently lags behind in improvements in morbidity and mortality and attracts the least funding yet is the time when health related knowledge and behaviours are typically set. It is essential that services for this population acknowledge key neurodevelopmental issues and reduced life experience and are in line with principles set out by the Welsh Government

Inequalities and the impact of the cost-of-living crisis

  • Our position statement on child health inequalities driven by child poverty in the UK and the Mind the Gap report produced by the NHS Confederation and a number of Medical Royal Colleges and third sector groups in Wales, clearly set out the evidence on links between poverty, inequalities and poor health outcomes.
  • We therefore welcome the announcement that there will be a refreshed and updated child poverty strategy for Wales, which we hope will be prioritised and expediated; and we would encourage the Welsh Government to consider child health outcomes and child health inequalities as part of that work. 
  • The strategy should provide national targets to reduce child poverty rates, with clear accountability across Government. We would also encourage the Welsh Government to review and expand the Children and Young People Plan so that future iterations form a comprehensive cross-departmental child health and wellbeing strategy that will address health inequalities and the impact of child poverty; and outline the role each department has in contributing to solutions. 
  • Among the many areas in which long term conditions and child health inequalities intersect is in school attendance. With this in mind, we Welcome the Welsh Government’s Whole School Approach to mental health and the Healthy Schools scheme delivered by Public Health Wales. We urge the Welsh Government to ensure these programmes are adequately resourced and delivered at pace with robust evaluation to capture and roll out learning.  

Action to improve prevention and early intervention

  • Action to prevent children and young people from developing chronic or long term conditions is absolutely vital if we are to reduce the numbers of children and young people being ill, missing school or requiring hospital treatment – and if we are to safeguard services in the future.
  • We have welcomed the Welsh Government’s Healthy Weight Healthy Wales programme, which must be delivered in full and at pace, given the extremely concerning data on childhood obesity and the inequalities underpinning those numbers revealed by the Child Measurement Programme for Wales.
  • Healthy Weight Healthy Wales includes a commitment to expanding that programme so that we have data points other than at reception age and are better able to understand children and young people’s weight throughout their school careers. This work must be delivered with urgency.
  • We have also called for full and swift implementation of the policy and legislative package around the healthy food environment consulted upon by the Welsh Government last year as part of its HWHW commitments.
  • The Welsh Government consulted last year on a new framework for social prescribing in Wales and we hope that when the updated framework is published, that it will have a far greater focus on children and young people in general and in particular greater consideration as to how social prescribing can interact with community sport and leisure facilities and youth clubs to encourage physical activity; as well as interact with other relevant Welsh Government initiatives, legislation and programmes such as the ALN framework, the healthy schools programme and the Whole School Approach.
  • We have also been supportive of the Welsh Government’s commitments around tobacco control and its strategy, A Smoke Free Wales. In particular, we have welcomed the ambition for Wales to be smoke-free Wales by 2030, the commitment to taking further steps to protect people from the harms of second-hand smoke and the focus on children and young people.
  • We have previously noted the importance of prevention and early intervention around mental health and neurodiversity and the need to ensure comprehensive rollout of programmes such as the NYTH/NEST approach and the Whole School Approach. We have also welcomed a Welsh Government White Paper on legislation for better air quality in Wales. Taken together, these strategies and policies could have a significant impact on preventing long term illness in children and young people.