Aim A: Person-Centred Care
The consultation paper explains that feedback from services and people with chronic pain indicates that challenges remain in ensuring consistent access to appropriate information, advice, treatment and support at the point where it could be most effective for an individual's needs.
Aim A: Person-Centred Care
Ensure access to appropriate information and support based on an individual's needs.
Question 3- Should this aim be a priority
A substantial majority – 96% of those answering the question – thought that Aim A should be a priority. A small number of individuals did not think so.
We will improve the quality and consistency of information on chronic pain and make it more easily accessible. We will empower people to understand their condition and better manage its impact on their physical and mental wellbeing.
Question 4- Should commitment 1 be included in the Framework
A substantial majority – 90% of those answering the question –thought that Commitment 1 should be included in the Framework. All organisations thought Commitment 1 should be included, with 88% of individuals supporting its inclusion.
Question 5. Please explain your responses to Questions 3 and 4.
A total of 95 respondents provided a comment at Question 5.
An initial query was whether Aim A - and by extension Question 3 – refers to information that is self-directed or provided via primary care services, and who is responsible for assessing the needs of those receiving this information.
In their further comments a number of respondents, including individuals with lived experience of chronic pain, commented on the importance of being able to access the right information. However, some respondents with lived experience also reported that they have not received the information and ongoing support they needed. There were also references to the currently available information being variable in quality and content, including from Individual and NHS respondents.
From a clinician's perspective, it was stressed that primary care workers need access to information, knowledge and training in order to provide a consistent message that supports patients. From a patient's perspective, being able to access good quality information was seen as key to their wellbeing and long-term self-management.
Although most were supportive of Aim A and Commitment 1, there was also a view – including from some of those who had not agreed that Commitment 1 should be included – that the focus should be on services and treatment rather than on information. Other concerns included that the consultation paper:
- Reads as if the intention is to tell people about their own conditions when, in fact, people living with a long-term condition are well versed in their abilities, limitations, and have tried everything to help themselves to deal with it.
- Talks about empowering patients but does not address the issue some respondents reported of medical professionals not considering their experiences as serious enough for referral or telling them there is nothing that can be done to support them.
Others commented that, while providing good quality information is important, achieving Aim A and Commitment 1 in isolation will not move services forward. Specifically, it was suggested that the provision of information to existing health services that are already ill-equipped at dealing with chronic pain, is unlikely to drive improvement.
Person-centred information and support
Some respondents noted their support for ensuring that people have access to appropriate information and support based on their individual needs. As at Question 2, some respondents also highlighted that everyone's situation will be different and that a one-size-fits-all response is not appropriate. Patients being able to access information tailored to their needs, along with the support to use it, was expected to help to reduce inequalities across Scotland.
Connected comments were that information should be customised to the individual and that this requires input from health care professionals. There was also reference to recognising that patients may need time to understand their own needs and to consider their options. Where options exist, and especially if there is no good basis for a choice between two or more care options, there was a call for the patient to be made fully aware of all their options.
However, for a small number of respondents there was a possible tension between ensuring that the information and support provided is tailored to individual needs, whilst also seeking to achieve consistency.
Quality and consistency
Improving quality and consistency was seen as beneficial to both patients and healthcare professionals. In terms of what equates to quality in this context, ideas included that:
- Clarity, readability and the use of plain English will be key. However, information should not be 'dumbed down'.
- People with lived experience of chronic pain have a vital role to play in drafting and reviewing new materials.
- Keeping public facing information up-to-date will be challenging, including because the evidence base and treatment technologies are continually evolving.
When consistency was referenced, it was often to suggest that it is important and, for example, that patients should receive the necessary information, support and care, irrespective of where they live in Scotland. Consistency in the key messages shared in all of the services where people access healthcare was also seen as important. There was specific reference to in-patient areas, specialist chronic pain services, GP practices and community pharmacies.
While most of the comments relating to consistency were whole system focused, there were also comments about the consistency of information being provided to any single patient by different health care professionals. They included that, if a health care professional considers something has previously been missed or incorrect information given, they must speak up, even if it is an inconsistent message.
Overall approach and coverage
A general observation was that a review of all information resources available would help to ensure that they are addressing the needs of individuals with pain. In terms of the framing of any new or revised information, comments included that:
- It should be grounded in research, evidence based and verified. A specific suggestion was that an editorial policy should be developed.
- Any approach needs to focus on critical health literacy, with patient experiences grounded in a wider context.
- Relative to current levels, the content should be expanded. An example given was that in one area the NHS provides a two-hour information session, while a third sector organisation offers eight two-hour sessions.
- It will be important to be mindful of language used, and to avoid stigmatisation and victim blaming. This issue was highlighted with particular reference to obesity, and it was reported that weight stigma is a significant barrier to participation and access to services for many people. There was a call for those providing information on chronic pain to be mindful of this danger to ensure individuals feel empowered and able to access the services they need.
In terms of the focus and coverage of the information available, respondents identified the following elements as important:
- How pain is created in the body and mind. However, it was also suggested that there should be a limit on how many times a person is told what causes pain and what their attitude towards it should be.
- Risk relating to the transition between acute and chronic pain and/or the risk of pain persistence and/or persistent disability.
- Pathways and access to treatment.
- The pain management options available, along with their limitations and applicability to the long term.
- Issues associated with chronic pain, such as mental health and social issues.
- Resources for people after they have gone through a structured pain management programme in secondary care.
- A Directory of Services, with signposting to available services and support groups.
Respondents also suggested that information about new medicines and pain control techniques should be made available.
Accessibility and delivery
The importance of information being available and accessible to all was stressed, with a number of respondents highlighting particular needs or groups requiring consideration. Comments included that the audience for the information will be diverse, and that attention will need to be paid to:
- Literacy levels, including health literacy.
- How to get information to people who are disadvantaged or difficult to reach, including those who are digitally excluded. An NHS respondent reported that in their area a third sector organisation lends tablets preloaded with Wi-Fi to some of their patients, and that this in an invaluable resource.
- The needs of people for whom English is not their first language.
On the theme of how information should be shared, observations included that online resources, including interactive resources and videos, will be important. Specific proposals were:
- The creation of a single, one-stop-shop style website for all things relating to self-management of chronic pain.
- The upgrading of NHS inform to include comprehensive pain information was also proposed.
Of relevance to this latter proposal was a suggested national review of the barriers to people accessing information using existing national platforms like NHS inform. The importance of considering who will be responsible for keeping any online resources up-to-date was also highlighted.
In addition to the development of a national information resource, it was suggested that a public campaign approach could be considered.
Although many of the comments focused on nationally-developed and delivered resources, it was also noted that some form of local targeting - for example by providing information on local services or through mechanisms such as local newsletters - could be helpful.
Other comments were that information should be made available in:
- Primary care services. It was noted that the majority of people with chronic pain are initially or totally dealt with in primary care services. Therefore it is important that GPs know what services are available to be able to signpost appropriately.
- Community pharmacists. They were described as easily accessible and it was suggested that they could play a bigger role in supporting people to manage their pain. There was specific reference to the Medicines care and review service and to being able to refer to other services, such as exercise schemes.
- Community organisations. It was suggested that health-focused organisations could be promoted as equal partners to local GPs, and could, for example, provide information, activities, and workshops.
- A broad range of locations, including places like supermarkets and libraries, as well as in the more obvious places like GP practices.
- A range of languages.
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