Long term conditions - framework: consultation paper

Healthcare Quality/What You Told Us

44. This section concentrates on the organisations and places which provide care and support to people with long term conditions. These range from health and care support services, community hubs and the third sector and how these work collaboratively and cohesively to provide safe, effective, timely and person-centred care to support people with long term conditions to optimise their quality of life. This includes aspects of long term condition care from early identification and diagnosis to ongoing treatment and management.

45. Valuable work in all these areas has been delivered through the combined efforts of the third sector, NHS boards, people with lived experience, the wider public sector and the Scottish Government. Social care also plays a key role in enabling people to live well for longer with long term conditions and also reduces pressure on other services.

46. The third sector are vital in supporting those with long term conditions and their families in providing them with care and support and signposting to wider services.The views of clinicians in this process is also vital, given their day to day role in supporting and treating those with long term conditions. Their experience is important in providing views and opinions on improvements that can be made.

Access to care – what you told us

46. People discussed issues with access to secondary care, with long waiting times for initial appointments, and regular check-ups not being carried out. This also included access to appointments, both regarding location and times of day, which is especially important for those with sensory impairments.

47. Participants also discussed how long waiting times played a negative role in their care. Many felt that waiting times for treatments add to their stress and confusion as they are left to manage their condition alone while waiting on the relevant care.

48. Some participants raised concerns about the lack of coordination across specialties. This results in having to repeat information to different care teams, which can be exhausting for someone living with a long term condition. This is often referred to as a ‘postcode lottery’ for services, where care provision and coordination varies across NHS boards. An overwhelming discussion point from these sessions was that equitable care across NHS boards would improve care.

49. Several participants told us of the value of having flexible ways for people with long term conditions to access care depending on their needs. This could be remotely, in-person, scheduled or drop-in. This flexibility was seen as particularly helpful for people who found it difficult to travel to get to in-person appointments.

50. People told us that the lack of joined up care often resulted in burdening the patient with information retention and seeking out new services, as opposed to appropriate signposting being available to them.

51. We also received feedback that people living with conditions where fatigue is a symptom find it difficult to attend morning appointments.

52. Lack of formal psychological support was mentioned in feedback and many people felt that, when this was available, it made a big difference to their ability to manage the mental and physical burden of their condition. The availability of this support often depended on where someone lived. Many participants spoke of the value of peer support groups in helping them cope and signposting them to services.

53. Some participants also flagged negative experiences around the conditions being there to build a relationship with their care team, explaining that they often have to rely on peer support groups for this instead.

54. The following questions are designed to be deliberately open to allow you to share your thoughts. If there is no question focusing on an area/issue you feel strongly about, please add it to the final comments section. You may not have any thoughts about some of the questions or there may only be a specific area you are interested in commenting on; nevertheless we would still appreciate your thoughts. If you do not have an answer for a question, just skip it and move onto the next. Your responses will still help shape the strategy.

55. Some of these questions ask participants about experiences of living with their long term condition. We understand that people other than those with long term conditions may respond: for example, people working with those who have a long term condition. In this instance, please respond with regard to your experiences of the people you care for or support.

Data – what you told us

56. People told us that the changing of GPs each time they visited their health centre was exhausting. This was especially so when living with a long term condition and needing to explain one’s medical history from the beginning.

57. Many people spoke of the difficulty managing multiple conditions each requiring potentially different medications, appointments and investigations. We heard about a lack of care coordination and oversight for people with long term conditions which means patients often felt confused and frustrated. There is also a significant administrative and treatment burden to having a long term condition, trying to find out information on care, services and managing different appointments. Participants frequently spoke about the need for accessible patient records across specialties to allow joined-up care, better communication and better understanding by professionals of their condition.

Self management and patient Information – what you told us

58. People want to feel empowered to make better choices about their health. Enabling a greater knowledge and responsibility for self-care and self-management in our population is key – allowing people to take control of their own health care, while acknowledging that for some people this will be more challenging. It is not enough to just inform people - extra support must be provided for those whose environmental, financial or educational needs make getting healthy and staying healthy harder. Supporting people to take control could involve using innovative technology to enable a person to undertake simple health checks and to know what this means (weight, height, blood pressure, cholesterol etc), gain online access to health and support information and manage appointments, for example through the development of the Digital Front Door do online risk assessments and make lifestyle changes with digital and community support.

59. Participants in our focus groups with people with lived experience - said peer support allows for people with similar experiences to share what works well for them and raises awareness of the services which are already available which they otherwise might not have known about.

60. Participants explained that being supported to manage their own conditions is a positive aspect of their care. The Self-Management Strategy for Long Term Conditions outlines that support to manage a long term condition should include “information leaflets; courses run by others with similar conditions; one to one support; structured education; and self-management courses”.

61. Medical device management is important in self-managing conditions, ensuring patients are equipped with the tools and skills to allow them to do so.

62. At our engagement event with third sector organisations for long term conditions, there was comment that: “We distinguish between self-management and supported self-management. Self-management is what everyone with a long term condition does, because they don't have a choice. They might do it well or not very well. For a lot of people, they need support to self-manage well. That's a combination of peer support and health coaching. What we need is supported self-management.”

Clinical information and education – what you told us

63. Many participants used key words such as ‘feeling listened to’ or ‘building relationships’ when discussing their care team. They explained that feeling like their health professional understood and cared about how they were feeling made a positive difference to their care experience.

64. Many shared reflections that these relationships were often hard to come by, and that they felt ‘lucky’ to have built these relationships.

65. However, while it is positive to hear of these individual stories, it is important to recognise that individuals should not feel lucky to build connections with their care team, as this should be the standard across all health professions and boards, as reflected in the GIRFE^[13] (Getting it right for everyone) principles.

Prevention and early intervention

66. Prevention can play a role in every stage of the development and management of a long term condition. For example:

• Interventions such as screening or supporting lifestyle changes which modify risk factors can prevent the occurrence of a disease or delay the onset;
• Timely and appropriate detection of the risk factors that may lead to long term conditions, with rapid initiation of lifestyle support, access to local or national programmes and good early treatment intervention – all of which would aim to remove or reduce the risks.
• The development of associated long term conditions and the physical, psychological and economic burden of multi-morbidity and disability are reduced.

Prevention and early intervention – what you told us

67. Early detection of disease is being impacted by long waiting times for diagnostic tests and, once diagnosed with a long term condition, many people felt there was limited regular access to medical specialists. Many felt that waiting times for specialist care add to their stress and confusion as they are left to manage their condition alone while waiting for care. While speaking to a specialist nurse was invaluable for many, one participant in our focus groups spoke of a lack of doctors who specialise in their condition within Scotland. In remote areas, we heard that there are also challenges around access to specialist care and outside general practice being intermittent and unpredictable due to staffing shortages.

68. The importance of access to healthy environments was mentioned regularly. We must recognise the relationship between the environment that people live in and health-related behaviours. For example, during our lived experience focus groups, many people spoke of the benefit of affordable sports and therapy classes close to home.

Inequalities

69. Long term conditions affect everyone, but some inclusion health populations are disproportionately affected. These include people living in more socio-economically deprived areas, minority ethnic groups and rural communities.

70. Health inequalities have been defined as the ‘systematic differences in the health of people occupying unequal positions in society’^[14]. These differences are primarily unjust and avoidable^[15]. They are extremely complex, and can be observed in relation to many different, often intersecting, social dimensions e.g. income, social class, geography, racism and discrimination, disability, gender and more. These dimensions shape individual experiences and health through life, including long term conditions. There are many factors that drive health inequalities and healthcare itself is estimated to account for 20% of health inequalities. This means that it is important that healthcare is designed and delivered in a way that it is most accessible to the people with the highest healthcare needs.

71. Reducing health inequalities is a major component of the Scottish Government's overall purpose of achieving ‘sustainable and inclusive economic growth’. This purpose is underpinned by the National Performance Framework, made up of 11 National Outcomes. Several of the outcomes are relevant to health inequalities and their determinants, particularly ‘We tackle poverty by sharing opportunities, wealth and power more equally’, as well as those in relation to the economy (including income inequalities), education, children and young people, health, and more.

72. The framework explicitly links to the United Nations’ Sustainable Development Goals, which includes a goal to reduce inequalities.

Inequalities – what you told us

73. Regarding inequalities, different healthcare challenges for long term conditions are faced by different groups. For minority ethnic communities, third sector representatives told us that it can be challenging to communicate effectively with clinicians who are not culturally aware. Additionally, that healthcare professionals do not always consider that English isn’t someone’s first language. Regarding age, we heard that, in an ageing population, not everyone is or wants to be online. Also, that stigma around certain conditions (from dementia to weight- related stigma associated with obesity rates) can prevent individuals from being taken seriously or comorbidity being ignored/overlooked.