Long term conditions framework: consultation analysis

7. Question 5

What would help people to access care and support for long term conditions more easily?

Introduction

The vast majority (90%) of respondents answered Question 5. The analysis identified three themes, including:

• theme 1: recurring themes from earlier questions
• theme 2: addressing inequalities and barriers to accessing care and support
• theme 3: addressing challenges facing the health and social care sector

Theme 1: Recurring themes

The vast majority of respondents reiterated points raised at Question 4 and/or points raised at earlier questions. In summary, respondents highlighted things that could help people access care and support for long term conditions more easily. These included:

• awareness raising and education – activities to increase understanding of: their rights; available care and support; accessing care and support; and how to manage their condition(s) as effectively as possible
• people with long term conditions must be able to find the information they need easily, and healthcare professionals must be able to provide accurate and timely information and signpost to appropriate care pathways/resources
• accessible information and services available in a range of formats and settings – including digital and in-person support
• a joined-up, integrated and whole-system approach to care and support across all sectors – to improve coordination and continuity of care and opportunities for personalised needs assessment, care planning and support
• accessible and inclusive routes for engagement, improved referral pathways (including self-referral options) into care and support, and to ensure effective transition between services
• development of central holistic care hubs/one-stop-shop access points/single point of access/contact model (‘no wrong door approach’), including a simplified and proactive approach to referral pathways and signposting, streamlined communication between healthcare professionals and people with long term conditions, and improved data sharing
• greater use of integrated technology and digital innovation
• an increased focus on prevention and early intervention – for example, making health condition screening more accessible to the public

Respondent quotes which help to illustrate theme 1 are presented below.

“There are multiple front doors to services and many access routes which can result in people ending up on different pathways, receiving different services with different outcomes or experiences. We need to provide clear and accessible information, simplify referrals, increase self-referrals, and improve links across systems.” Edinburgh Health and Social Care Partnership

“Paediatric and adult healthcare teams must work together to ensure the transfer of care is joined-up. A Young Epilepsy survey found significant disparities in how many joint appointments young people with epilepsy received as part of the transition process.” Young Epilepsy

Theme 2: Addressing inequalities and barriers to accessing care and support

Many individual and organisation respondents highlighted the range of barriers people with long term conditions (and unpaid carers) faced in accessing care and support. These responses called for action to address issues such as: digital exclusion and low health literacy; geographic barriers; cultural and communication barriers; finance barriers (for example, cost of travelling to appointments, cost of healthy eating); stigma; dismissive experiences; and limited local availability of care and support.

Consistent and equitable access to care and support for people with long term conditions regardless of the person’s condition, location or background was emphasised as critical – as well as continued work to tackle the barriers people with long term conditions faced in accessing care and support.

These respondents also called for: greater flexibility in the timing and location of care and support; minimising gatekeeping delays; increasing awareness of, and access to, advocates; embracing technology to improve access to care and support; ensuring people with long term conditions did not have to repeatedly present in different medical settings before being referred onto a pathway; minimising the number of appointments, assessments and tests people with long term conditions needed to attend when they have multiple professionals/ service providers involved in their care; and enhancing trauma-informed practice.

Respondent quotes that illustrate theme 2 are presented below.

“You cannot access a GP easily – the phone call at 8am is really stressful and you get told there are no appointments left and you repeat this for several days in a row.” Individual respondent

“New Scots repeatedly stress the need for improved English language training, alongside the reliable provision of interpretation and translation services in both health and social care. The group suggested creating better welcome packs and local information guides in different languages, which would explain their rights and how to access healthcare.” Scottish Refugee Council

Theme 3: Addressing challenges facing the health and social care sector

Some respondents highlighted the challenges faced by the health and social care sector in Scotland and suggested these would need to be addressed to help people access care and support for long term conditions more easily and improve the availability and quality of health and social care support. These challenges included:

• workforce challenges – staff attraction and retention, staff shortages, pay and conditions, investment in workforce development and training
• funding and capacity pressures
• waiting lists and the impact on access to care and support
• trust in the health and social care system and the impact this has on ensuring people come forward for care and support earlier

Respondent quotes that illustrate theme 3 are presented below.

“You can’t build effective healthcare services without secure, long-term funding. You can’t hire staff, plan services, or deliver real care when funding is short-term, inadequate, and based on guesswork.” Individual respondent

“Expanding and strengthening services through adequate staffing and funding is essential to ensure that people living with MS can access the care and support they need in a timely and consistent manner. Significant barriers to access – largely driven by insufficient workforce capacity and resources – are adversely affecting quality of life, effective management of the condition, and overall health outcomes. A pressing challenge is the lengthy waiting times for neurology appointments across several health boards in Scotland.” MS Society Scotland