Creating a healthier Scotland - What matters to you

Person-Centred Care

The themes of person-centred care, support to self-manage your health, and the importance of taking a holistic approach to health and wellbeing were raised again and again. You told us that you want to be listened to and treated with respect, but most importantly treated as individuals rather than conditions or numbers. It makes a big difference when you have a good relationship with health and social care staff and they know what matters to you and your family. Lack of continuity of care is a concern.

Being involved in the decision making process, and treated as an expert in your own care and the care of loved ones, is important to you. You said that information is critical, but it has to be provided in the right way at the right time. Too much information can be overwhelming. There needs to more support and encouragement to have open discussions about end-of-life planning.

Many of you shared your experiences of good person-centred care and the difference that can make to your health outcomes including the provision of social care. The term 'person-centred care' can mean different things to different people depending on their circumstances. Here are some of the ways you described it.

"It's important that people take time to listen to me."
Dementia Carer Voices event, Stirling University

"When I worked for the NHS I was told by my first consultant to always treat the patient how I'd want my parents, siblings or grandparents to be treated, and I think that was one of the most important lessons given to me."
Alliance, Citizen Wellbeing Assembly, Edinburgh

"Person-centred care means ensuring that loved ones are kept informed of my care needs."
Alliance, 8th Annual Regulation event, Glasgow

"People should be thought of as individuals with different needs even when they live with the same conditions as others."
Alliance event, Stirling

"Listen to service users and carers. They are the experts in their own health, so work collaboratively with them."
Tweet

"There's too much change in mental health and social work - for example Community Psychiatric Nurses, psychiatrists and social workers are always leaving or passing on service-users so there's not enough continuity."
Alliance event, East Dunbartonshire

"A local doctor who's known by the carer can build greater trust and react quickly without a need to retell the story over and over again."
Coalition of Carers in Scotland, national event

"Longer appointment times so that there is enough time to communicate clearly and to understand what is being said."
Scottish Commission for Learning Disability event

"GPs need more time for a holistic approach and a person-centred focus. This would help stop the 'tick-box' mentality."
Alliance event, North Ayrshire

It was clear that good relationships with health and social care staff really matter to you, especially at the local level where there are huge benefits in staff building up an understanding of you and your family. A lack of continuity of care is an issue and leads to frustrations when you have to re-tell your story to new faces over and over again. Others highlighted that having a meaningful conversation and building a relationship with a professional takes time and that the length of time for scheduled appointments doesn't help.

You told us how lots of different factors affect health and wellbeing and that services should consider the whole person and their life circumstances rather than just focusing on their symptoms or a single condition when they might have multiple conditions or more complex needs. As already mentioned in relation to mental health, you told us that some professionals were sometimes too quick to give you pills rather than take a more holistic approach to your health and wellbeing. You suggested that we need more social prescribing and recommended a wide range of alternatives to medication including diet, exercise, and volunteering as well as talking therapies, counselling and support groups.

"Doctors can prescribe nicotine replacements, so why not gym memberships?"
Alliance event, Edinburgh

"It's not enough to give out paracetamol. You have to treat the root cause!"
Scottish Health Council event, Aberdeen

"We have to move away from over-medication and towards encouraging health in as many ways as possible."
Facebook comment

Many of you said you want more support to manage your own health, whether with existing health conditions or monitoring your general health and wellbeing. You suggested a number of ways in which self-management could be encouraged such as through better access to information and professional support, peer support and coaching, technology (e.g. digital apps and wearable technology), and online courses such as mindfulness training.

"We need to support and empower people to take an active role in self managing their own health and wellbeing."
Alliance event, Edinburgh

"People need to be educated and given information on what they can do for themselves taking ownership of their wellbeing, promote recovery and empowerment."
East Neuk Kindred Spirit event

Some of you spoke to us about end-of-life care, saying that there should be more support and information to encourage open discussions with family and health professionals. One group commented on this issue for children with life-limiting conditions.

"We need to change attitudes towards difficult conversations around death, with a focus on palliative and end-of-life care."
Alliance event, North Ayrshire

"Scotland needs to consider dying as a stage of life in order to efficiently plan care."
Alliance event, Stirling

"…all children with life limiting conditions should be able to access specialist palliative care services, more help for parents and siblings and better coordination of the available supports."
Children and Young People's Health Support group response

You returned to the issue of information and communication throughout the Conversation; in relation to person-centred care, a holistic approach and self-management as well as other aspects of your health and care journey.

Information must be available when the person is ready for it. You said that sometimes too much information could be overwhelming, for example, immediately after the diagnosis of a condition. Others felt you would have liked more information sooner, for example while you were still in hospital.

"We need to increase the accessibility of information about the services available in local communities. People mentioned that they often found out about useful support and services by chance, or after the point at which it would have been of benefit to them."
Alliance event, Falkirk

"There is a recognition that information is enormously important and that (not) knowing what is out there remains a barrier to people receiving the help they need."
Alliance event, Stirling

You told us that it is important that everyone can access information which affects the choices they make about their care, regardless of disability or language. There was agreement that information should be clear, use simple language and avoid jargon and abbreviations. It should be available in a variety of formats and there was a need for more translation and interpreter services to ensure patients and staff understood each other.

"I believe all individuals should be able to access information on all the key issues to allow them to make informed choices."
Scottish Older People's Assembly, Edinburgh

"It's better to get a phone call than a letter. Sometimes we can't understand letters."
Midlothian Local Area Co-ordination Reference Group event, Dalkeith

"Multilingual forms/applications and information leaflets to be made available."
Dumfries and Galloway Multicultural Association event

"Difficult to book interpreter and even when they come, sometimes they are so busy that the interpreter would leave for the next job before the doctor appointment was finished."
Society for English Learning through Bible Literature event

DID YOU KNOW?

• ALISS (A Local Information System for Scotland) is an online resource that helps to signpost people to useful sources of support within their local communities. ALISS has been developed with people with long term conditions and professionals, and it offers a means for communities to work together to gather, maintain and share information about resources and community assets that can help us to live well. www.aliss.org
• The Scottish Government is working with partners to develop an online patient portal which will give every citizen in Scotland access to their summary patient record by 2020.
• The Strategic Framework for Action on Palliative and End of Life Care recognises the need to create a culture of openness about death, dying and bereavement in Scotland.