Enabling carers to support better care closer to home
By Anne Bowers, Associate Director
There is a stark challenge for the health sector that comes from the changing demographic patterns of age and sickness:
- By 2018 the number of people with three or more long-term conditions is predicted to rise from 1.9 million to 2.9 million.
- By 2030 the number of older people with care needs is predicted to rise by 61 per cent.
- By 2030 there will be 17 million people with arthritis and 3 million with cancer.
Home is where every one of these people will receive nearly all of the care that will meet their needs. Each person with a long term condition spends 5,800 waking hours a year self-managing that condition, and only about 5 hours with the NHS.
Organisations supporting the healthcare system must focus on reducing stress for carers and increasing capacity to care effectively at home, which of course means less demand on outside services. First we must recognise who is a carer; not every carer identifies themselves as being one. Second we need to understand that carers are not just carers; they are users of health and care services as well. Third we need to remember that carers’ needs change over time, and not just because the needs of the person they care for evolve.
Working with carers in North West London, on behalf of the eight Clinical Commissioning Groups (CCGs), PPL found the most consistent – and important – issue they raised was the resilience they needed to navigate the complex health and social care system.
Carers told us over and over again that there are 10 straightforward but critical themes they want to experience from everyone in the health and social care sector. These are:
- Every service should ask “Are you a carer?” and “Is someone providing you with care?” The identification of carers is still poor. GPs’ surgeries are crucial to this process as they are the first place everyone goes.
- Consistency of quality is critical. There is a need for a consistent quality of service across all providers, including GPs and community services.
- Carers don’t want to have to keep retelling their story. Carers should not be made to repeat their circumstances, partly because they may feel stigma/shame but also because it becomes tedious and a waste of time.
- Communication needs to be meaningful. Clear, consistent and regular communication underpins the quality of any service. Carers need to know: who is providing services, when they are providing them, and how they can access more support.
- Carers want and need to build their skills. All services should think about how they can include training in their delivery; training ‘on-the-job’ is vital.
- Transport for carers and for services is crucial. Services need to be close to transport and have accessible parking. Transport for professionals who are providing services at home is also critical.
- Carers need support to make sure their voice is heard. Not all carers feel confident to speak up to professionals – services must create opportunities for carers to be heard and to be engaged.
- Change itself can be difficult. It is much easier for carers to cope with change if they are forewarned. New services, new locations and new processes can cause nervousness and stress for carers and for the people they care for.
- Providers are critical. The delivery of a service in the NHS and outside are as (if not more) important than the design of the service. Providers need to be directed appropriately by their commissioners.
- Pathways need to include carers. Pathways need to take into account the experience of the carer – from both a practical perspective and so as to enable carer resilience. We recommend a generic ‘carer’ pathway that is developed and made specific for each clinical pathway.
We know that carers are critical to supporting people with long term health conditions. As the numbers of patients grow, and as our resources become scarcer, all services must work together and be designed to support both carer and patient.