Charter of Patient Rights and Responsibilities for People who use the NHS in Scotland - Consultation report

5. Findings

The consultation paper sought views on six questions which focused on the content, accessibility, design, availability, the balance of rights and responsibilities and general views on the Charter. The questions are set out below with a summary of the main points and issues raised in the consultation responses shown under each. The Scottish Government response and the actions taken or proposed are reflected at Section 6 of this report.

The link to the consultation paper is given in Annex A together with the full list of questions.

Question 1 - Content

a) Do you think the level of detail in the Charter is useful and appropriate?
b) Is there any information not included in the Charter that should be covered?
c) What would make it better?

A total of 56 responses were received to this question. There was a general consensus amongst most of the respondents that the detail in the Charter was well pitched for raising public awareness of rights and responsibilities when using the NHS in Scotland.

“The Charter is a useful summary of what NHS service users should expect in Scotland, and is built on solid equality and human rights principles such as respect, safety and transparency.” Equality and Human Rights Commission

It was felt that whilst the signposting at the end of the Charter to more detailed information was appropriate this should feature or be referred to at the beginning.

Some respondents thought the Charter was too long, a bit repetitive and the level of detail given and terms used in the various sections was not consistent.

Several respondents offered comments on specific areas and suggested detailed examples, additional or alternate wording for use in the Charter. For example, suggesting:

• that information should be given in relation to:
• the specific pieces of legislation which gave rise to the rights
• support and assistance available in relation to health costs, patient transport and travel expenses
• accessing hospital health services through GPs
• access to independent advocacy and spiritual care
• situations where it wouldn’t be possible to ask for a second opinion
• the documents you would be charged for if you request copies of health records
• the rights and responsibilities of children and young people
• that the terms such as ‘clinical judgement’, ‘pharmacies’, ‘obstetrics’ and ‘optometrists’ should be avoided
• further clarity, rewording or expansion was needed in some entries and in particular:
• around the use of the words ‘should’ and ‘must’
• the Treatment Time Guarantee and its application
• clarity on the roles of the organisations listed (e.g. the Information Commissioner and Patient Advice and Support Service).

A few respondents seemed concerned about the purpose of the Charter and how it might be used, with a suggestion that the language was confrontational, paternalistic and the document “…biased in favour of the service provider”.

Question 2 - Accessibility

a) Do you think the information in the Charter is written in a way that is easy to understand?
b) Does the format of the Charter make it easy to find the information you need?
c) What would make it better?

A total of 52 responses were received to this question. Some of the comments received in response to this question related to the ‘content’ and have been considered as part of Question 1.

Most of the respondents felt that the Charter was written in a way that was easy to understand. There was however an acknowledgement that there was a need for alternative formats to make it accessible for all. A variety of suggestions were given on what alternative formats should be made available. This included other languages; Braille, British Sign Language (BSL) and audio versions; children’s versions; as well as a summary and Easy Read versions. The majority believed that these formats should be easily accessible through the internet, with access to non‑web formats on request.

It was suggested that the inclusion of electronic hyper links within the Charter would allow easier and quicker access to the different sections when viewing online.

A few commented that it was not necessarily clear what subject area the icons used in the Charter related to.

Question 3 - Design

Do you have any comments on the design of the Charter?

A total of 43 responses were received to this question.

The general consensus was that the design and layout were clear but views were split on whether the A4 format was appropriate pointing out that A5 booklet was the norm for many for display purposes and was easier to handle. Several respondents suggested the development of a summary quick reference version as the length of Charter might be off putting for some.

“Its not the kind of document that could be mass produced and distributed in that format, but I don’t think it is designed to be used in this way, but rather for people who want to find out more.” NHS Highland

Question 4 - Availability

a) What do you think is the most appropriate way for people to get a copy of the Charter?
b) Do you agree that we should only make alternative formats available on request?

A total of 54 responses were received to this question.

The views expressed were mixed with various suggestions on how to raise awareness to all of the Charter ranging from press and media campaigns to posting one copy of the Charter to every home in Scotland.

Some suggested that there should not be a reliance on the web for public access and the Charter or a summary version should be available in GP practices, hospital receptions, waiting areas, community services etc. Others were of the view that electronic versions should be available to view online with paper copies, and alternative formats (identified in response to Question 2) should be provided on request.

Several responses did ask that the decision be influenced by the costs involved.

Question 5 - Rights & Responsibilities

a) Do you have any comments on the balance of rights and responsibilities set out in the Charter?
b) What would make it better?

A total of 51 responses were received to this question.

A few respondents called for clarity around the use of terms ‘should’ and ‘must’ throughout the Charter in order to clarify the areas which reflected the legal rights of patients and which constituted good practice and were expected of staff.

The general consensus was that the balance between rights and responsibilities was appropriate but some considered that the Charter did not go far enough to ensure patients took their responsibility seriously or that they would necessarily understand or appreciate the potential implications of certain behaviours.

Several respondents felt that the Charter was useful and would serve to encourage patients to become more involved in their own health care.

“I think it is good to remind patients that they also have a responsibility to help themselves, and not just expect the NHS to do all the work.” Individual

With a focus on their rights, the patient would not only become empowered, but would feel able to challenge the NHS when their rights had not been respected.

Those concerned about its purpose suggested the Charter would be used as a management tool to regulate patient access to services.

Question 6 - General views

Do you have any additional comments to make about the Charter of Patient Rights and Responsibilities?

A total of 46 responses were received to this question.

In response to this question several respondents chose to comment on previous personal experiences and perceived failures in existing practices and procedures, rather than the content of the Charter. Although outwith the scope of the consultation the underlying issues raised in the patient experience stories were taken into account in the review of the Charter.

“The patient / doctor / health professional should be approached as a partnership, each with responsibilities.” Individual