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Listen
7. Providing services
At the events people reported that existing services for people with long-term conditions and unpaid carers are inadequate and under-resourced. There were concerns that decisions about funding are made according to what service providers think is needed and not according to the real needs of people using the services.
7.1 Consistency
People said they wanted services to be consistent throughout the country. This would mean equal quality and access across rural and urban areas of Scotland. Some suggested this would mean redesigning the NHS as one single health board covering the whole country. This would have the benefit of allowing there to be one approach to managing long-term conditions across all geographic areas. There was some support for this as a way to remove the risk of 'post code lotteries' of care.
It was suggested that the first step towards consistent services would be through strengthening managed clinical networks. These should be properly resourced so they can promote high quality care and share best practice in long-term conditions.
7.2 Person-focused
The care that services deliver must be centred around the person and be proactive rather than reactive. It must focus on the person's care pathway designed around individual need, and not the needs of the service. It must strike a balance between physical, social and psychological care and take account of the needs of unpaid carers. It must also be designed to meet the needs of people with all kinds of long-term conditions, not just those that are current political priorities.
7.3 Improving services
Participants called for a change in culture among services so that they become 'listening' services. Listening to individuals and carers and genuinely trying to shape services around their needs. This was recognised as a shift that would demand changes in the way managers, clinicians, practitioners, individuals and unpaid carers thought and acted.
The events also highlighted the need for people to be informed about what they should expect of services.
"People should know what care is good quality care."
The events found strong views about how services should be set up and delivered. The main suggestions were:
- A 'one-stop diagnostic shop' so that people can get their diagnosis quickly and effectively.
- Professionals to take more care in the way they break bad news. In particular people's dignity and confidentiality must be protected.
- Psychological support for people with long-term conditions and unpaid carers. This should be available from the start of living with a condition.
- Urgent need for local co-ordination of care for long-term conditions through key workers or co-ordinators to 'navigate' people through services.
- People with long-term conditions and unpaid carers as the leaders of services, not just recipients of care. People, unpaid carers and professionals should discuss and agree on their care.
- Well prepared, well supported consultant-led services for all long-term conditions.
- Opportunities to meet with professionals in a range of settings including hospitals, community and 'non-traditional' settings (for example leisure centres and libraries) and people's own homes.
- Services that are able to change over time in response to changes in people's needs.
7.4 Multiple conditions
There were particular concerns about people who live with more than one long-term condition. It was suggested that lack of co-ordination of services often means the needs of people with multiple conditions are not met. People recommended that streamlined service provision was especially important for these people. This would include co-ordinated medicine prescribing and liaison between different hospital departments to avoid people having to attend as outpatients for multiple appointments.
7.5 Outpatient services
In outpatient settings people wanted to be seen, diagnosed and treated quickly. It was viewed as reasonable to expect the same timescales as for inpatient treatment. People reported waiting several months for appointments and weeks for results. These delays meant people having to wait longer before being able to start treatment and this was seen as unacceptable. One option for overcoming these issues was the use of self-referral clinics. People highlighted these as a way of offering multi-disciplinary, holistic approaches and talked about the role they can play in reviewing medicines and monitoring side effects.
7.6 Access to services
"Listen to, and believe, patients and carers. Recognise barriers which make it difficult for them to access services."
Access to services was consistently identified as an area of concern. Issues included access for people in rural areas and availability of transport to travel to appointments.
People described the advantages of 'single points of access' through which they could access a number of different services. It was suggested that single points of access should enable people to reach all of the benefits they are entitled to. People also felt that this should include free medicines.
People emphasised the fact that the needs of people with long-term conditions and unpaid carers change over time. Some suggested that NHSScotland set up a system of ongoing assessment for people with long-term conditions and their carers. This would mean that services could respond to changes in people's needs over time. As well as helping make sure people's individual needs are met this would also be a way of monitoring overall needs in terms of long-term conditions (for example as the population gets older).
As well as discussing general barriers to services, the events also highlighted a number of specific gaps:
- The need for social, emotional and psychological support for people living with long-term conditions and unpaid carers came across very strongly. People described the effect that coping with long-term conditions has on their mental health and well-being. Many people talked about not having access to support and said there should be more help available including: community psychiatric nurses; counsellors; cognitive behavioural therapy; and 'talking therapies'. In particular people highlighted the links between long-term conditions and depression.
- People identified the need for more allied health professionals with expertise in supporting people with long-term conditions.
- The events raised the question of how to tackle areas where there are service shortages, for example speech and language therapy.
"Good social support can avoid the need for crisis intervention and in many cases admission to long- term care."
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