Meeting of the Parliament

Meeting date: Tuesday, March 10, 2020

Official Report 1009KB pdf

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Blind and Partially Sighted People (Access to Health Information)

The final item of business is a members’ business debate on motion S5M-20919, in the name of Stuart McMillan, on “Communication Failure? Review of the accessibility of health information for blind and partially sighted people in Scotland”. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes the contents of the RNIB Scotland report, Communication Failure?, launched on 17 February 2020, highlighting what it considers communication failures of NHS boards regarding people with sight loss or visual impairment; considers that the actions of each NHS board, including NHS Greater Glasgow and Clyde, which covers the Greenock and Inverclyde constituency, are putting blind and partially sighted people at risk of missing treatments and potentially leading to increased ill health due to inaccessible health information; believes that patient confidentiality is being breached due to individuals relying on carers, relatives or friends to read appointment letters on their behalf; understands that 170,000 people in Scotland have significant sight loss, and therefore considers that the need for accessibility is high, and notes the view that every NHS board should engage with organisations that deal with sight loss to provide a more person-centred approach to communicating with such people.

17:55  

I thank every member who signed the motion and those who will speak in the debate. I also thank Laura Jones of RNIB Scotland for her excellent work in producing the report, “Communication Failure? Review of the accessibility of health information for blind and partially sighted people in Scotland”. For the purposes of the debate, I will refer to it as “the report”. Some members of RNIB Scotland are in the gallery this evening: I am glad that they are here.

I have convened the cross-party group on visual impairment since my re-election in 2011. The cross-party group has discussed a wide variety of issues and has written to the Scottish and United Kingdom Governments, as well as to local authorities and, previously, to European parliamentarians. Our cross-party group has never been shy about attempting to find a solution to an issue or about thanking public bodies for their progress. For example, we recently wrote to the City of Edinburgh Council to thank it for banning A-boards from the streets of our capital. Any activity that the cross-party group has undertaken has been about making Scotland more accessible and fairer for people who are blind or partially sighted.

On 17 February, RNIB Scotland hosted an event in Glasgow on publication of its report. The room was full, and contained people who are blind or partially sighted and it contained health professionals. During my contribution that day, I said that I would seek to obtain a members’ business debate, because the issue needs first to be acknowledged and then to be addressed. I will provide a few suggestions that would help, because that is the correct manner in which to take further the findings of the excellent report

First, I will touch on some of the report’s findings. The report is the second such report that RNIB Scotland has published on the subject. In 2010, it produced the report, “Accessibility of health information for blind and partially sighted people”, which found a lack of recognition within the health service of the specific additional needs of blind and partially sighted people. The report showed that blind and partially sighted people did not experience the same patient confidentiality as sighted people experienced, because they were often forced to rely on others to give details of appointments, diagnoses and patient advice.

The Patient Rights (Scotland) Act 2011 and its accompanying “Your health, your rights: The Charter of Patient Rights and Responsibilities” set out that people

“can expect to be given information about your care and treatment in a format or language that meets your needs”.

Therefore, the new report, which has been published a decade later, should have shown major improvements.

RNIB Scotland’s report highlights four key findings and seven key recommendations. The first key finding is that patient confidentiality is being breached; the second is that

“Individuals are being put at risk”;

the third is that

“Some individuals were told that they could cope without an accessible format”

of their information; and the fourth is that some people

“did not feel ‘worthy enough’ to make requests and/or complain to their health service.”

I am sure that every one of us in the chamber will be disappointed by those findings and would like to thank the people who took part in the research.

The helpful briefing from Royal Blind has provided the following quotation:

“People with sight loss who access our services have complained about receiving self-testing kits (e.g. for bowel cancer) that are not visual impairment-friendly. This breaches patient confidentiality, as individuals must rely on carers or relatives to assist them with tests that should be taken in private.”

The briefing goes on to say that

“We have had feedback that private companies—such as telecommunication companies or utilities providers—are often better at accessible formatting by default than healthcare providers.”

Clearly, no matter how we look at the situation, every patient is of equal value and every patient not only deserves but should expect information to be available to them.

I welcome the report’s recommendations, and acknowledge that some of them are being delivered in part. Although that is welcome, it proves that there is still more to do, and that all health boards need to up their game. A more consistent approach across all health boards would be extremely useful.

I return to suggestions, as I said I would. I am aware that the report has been sent to every health board. I personally handed over copies—including CD and Braille versions—to NHS Greater Glasgow and Clyde on the afternoon of the report’s publication.

I congratulate the health boards that engaged with the research for the report. However, I am disappointed that five did not. That might well have been an oversight; nonetheless, blind and partially sighted patients deserve better.

My first suggestion is to encourage health boards to engage with RNIB Scotland—even at this stage—to inform them of how they communicate with blind and partially sighted patients.

Secondly, I consider that a short-term working group including the NHS and the wider patient health communication sector would be advantageous. I am sure that that would provide an opportunity for the health boards to understand fully the challenges that blind and partially sighted patients face. The group need not have a cast of thousands, but it should be focused and have key staff involved. It could include health boards that did not engage and boards that did.

Thirdly, it might be worth NHS boards considering contracting in communication services from any one or some of the organisations that can provide information in Braille. A number of organisations can do that. The work could even be undertaken on a trial basis to determine how effective—or otherwise—it is.

Ultimately, every patient wants to obtain correct and proper information in a timely fashion. Obtaining little or no information is unacceptable in this day and age.

Younger blind and partially sighted people are increasingly using smart phones because accessible technology is in-built. However, for some older people, Braille would be the first form of communication that they would use. The population as a whole growing older, and the blind and partially sighted community will be very much part of that community. There are 170,000 such patients in Scotland who require better information about their healthcare. I am sure that solutions can be found using the range of available technologies—at very little cost—to enable 170,000 people take more accurate decisions about their healthcare.

Once again, I thank everyone who has helped to make the debate possible. I again thank Laura Jones of RNIB Scotland for producing an important report. It clearly highlights that our NHS, although it undertakes lifesaving and world-leading research, and constantly challenges itself as new medicines, technologies and illnesses develop, still needs to address some more fundamental issues.

I hope that all NHS boards read the report, understand the issues, listen to today’s debate, engage with external organisations that might be able to assist, and see this as an opportunity to deliver improved outcomes for Scotland’s 170,000 blind or partially sighted people.

18:03  

I thank Stuart McMillan for securing this important debate and for raising awareness about the RNIB “Communication Failure?” report, which considers the accessibility of health information for blind and partially sighted people in Scotland.

In 2019, RNIB Scotland produced a report on the accessibility of health information for blind and partially sighted people. The report found a

“Lack of recognition of specific additional needs of blind and partially sighted people within the health service.”

It showed that people with visual impairment do not experience the same patient confidentiality as sighted people and that, on many occasions, they are forced to rely on others to give them details of appointments, diagnosis and patient advice.

The Patient Rights (Scotland) Act 2011 required the establishment of the charter of patient rights and responsibilities, which sets out that

“You have the right to be given information about your care and treatment in a format or language that meets your needs”.

“Communication Failure?” follows almost a decade after the passing of that legislation and is based on interviews with people with sight loss and information from various health boards.

The case studies that are featured in the review make for depressing reading, with interviewees referring to an inability to receive documents in an accessible format; a lack of awareness among national health service staff about the services that are offered by the NHS to improve access to documents; online processes that are inaccessible to people with sight loss; and people with sight loss reporting that they were made to feel not worthy.

Like Stuart McMillan, I was disappointed to note that a number of health boards did not reply to the RNIB’s request for information, which suggests that they are failing in their responsibility to adhere to NHS Scotland’s accessible information policy.

Screenings, doctor appointments and medical tests are an unavoidable part of life—they are how we stay healthy, and they must be accessible. Many of us may have experienced anxiety and worry when making a general practitioner appointment or when waiting for the results of a medical test. For many people with sight loss, that anxiety and worry will be significantly worse, and healthcare staff should know how to support the needs of blind and partially sighted people, both physically and emotionally. Currently, that does not appear to happen consistently across our health boards.

As we have heard, the review makes a number of recommendations relating to accessing healthcare information, accessible care, empowerment and helping people to get full control of their healthcare needs.

More than 170,000 people in Scotland live with sight loss, and, as the population of Scotland continues to age, it is likely that that number will increase. Without accessible health information, people with sight loss face growing exclusion, which will place an even greater burden on the NHS.

No person with sight loss should feel that they are not worthy when asking for accessible information from the health service. I therefore urge the minister to ask health boards across Scotland to consider the recommendations in the report, take a consistent approach to the availability and format of accessible information and take seriously their duty as outlined in the charter of patient rights and responsibilities.

18:07  

I congratulate Stuart McMillan on securing the debate. I know that he is assiduous in raising issues that impact on the lives of those who are blind or suffer from partial sightedness and that he progresses those issues in a determined manner as the convener of the cross-party group on visual impairment.

As has been stated, this debate is focused on the most recent RNIB Scotland report, “Communication Failure?” At the outset, I commend RNIB Scotland for the comprehensive work that it has carried out in assessing where matters currently stand for those with visual impairment in terms of access to information about their healthcare.

Where matters stand is evidently not satisfactory. It is clear that the patient confidentiality of those with visual impairment is being breached. In fact, as we have heard, they have to rely on carers, relatives or friends to read on their behalf their confidential correspondence from the NHS. As Stuart McMillan noted, the briefing from Royal Blind and Scottish War Blinded in advance of the debate put the issue in focus when it mentioned that, of course, such correspondence would include test kits for conditions such as bowel cancer, which the patient would have to get someone else to read to them. That is not acceptable.

We have heard about the breach of the underlying legislation and the charter of patient rights and responsibilities. Further to those, people with a visual impairment have a right to be given information about their care and treatment in a format that meets their needs. It is beyond question that individuals are being put at risk of missing appointments and treatments and of seeing a deterioration in their health, which is unacceptable.

In their interactions with the NHS, it is surely not for those with a visual impairment to start to kick up a fuss and campaign; rather, the onus must lie with the relevant health board to get things right. In that regard, RNIB Scotland has set forth a number of recommendations, which include calling on each health board to review its procedures to ensure that it has policies on accessible health information, to tackle the very serious concerns that have been flagged up. RNIB Scotland also calls for appropriate training for healthcare staff to be provided.

I very much hope that that work will now proceed as quickly as possible. As the MSP for the Cowdenbeath constituency, I will write to the chief executive of NHS Fife, because it is one of the NHS boards that did not respond to the RNIB Scotland survey. I will ask the chief executive to explain why that is the case and what NHS Fife will now do to ensure that the concerns that have been flagged up by RNIB Scotland are met.

Here, in Scotland, we have a real opportunity to lead the way in ocular care, given our commitment to free eye examinations. It is vital that those with visual impairment have access to the health information that they need, which includes information not only about ocular care but about other healthcare needs. Health boards must do better in that regard.

I ask the minister to clarify, in her winding-up speech, what steps the Scottish Government will now take to ensure that health boards discharge their responsibilities in this matter.

18:11  

I thank Stuart McMillan for highlighting the important report by RNIB Scotland and bringing it to the chamber, and for his on-going commitment in this area through the cross-party group on visual impairment’s important work. As others have said, Laura Jones and RNIB Scotland deserve to be congratulated on the work that has gone into the report. I am also grateful to Royal Blind and Scottish War Blinded for their work to support people of all ages and those who have served in our armed forces, and for the briefing that they provided ahead of the debate.

I am proud to have recently become a patron for Disability Equality Scotland—I refer members to my register of interests in that regard. Disability Equality Scotland works to make Scotland inclusive for all, but reports such as RNIB’s highlight just how far we still need to go. Not accounting for the needs of blind or partially sighted people, particularly when it comes to medical needs and health records, is not only discriminatory but potentially dangerous, particularly if people miss important appointments. We have heard about the potential for huge breaches of patient confidentiality, but the margin for error when it comes to people missing treatments because they are not receiving proper communication is worrying. Annabelle Ewing was right to say that that is not acceptable, particularly in the example that she gave of self-testing kits for bowel cancer screening. That is a huge issue of not only privacy but dignity. I hope that the debate will result in some change happening very quickly, as what has been described should not be happening in 2020.

Like Annabelle Ewing in her constituency, I will take up the matter with the health boards in my parliamentary region, and I hope that members across the chamber will do the same. The report is a useful tool to enable MSPs to raise issues with local health board representatives. As the Scottish Labour health spokesperson, I hope to work collaboratively with ministers on what we can do at a national level to support health boards and ensure that the needs of partially sighted or blind people are being fully met. However, I believe that it cannot be left to individuals and individual charities to champion the issue, as it is also a human rights issue. Royal Blind and Scottish War Blinded made that point in their briefing, and we should all be guided by that.

I had the pleasure of visiting the excellent guide dogs team that is based in Hamilton, in my local area, and doing a blindfolded walk there that involved having to navigate street furniture, including A-boards, to understand the challenges that blind and partially sighted people face.

As I have experienced through my work in supporting Disability Equality Scotland, a lack of access panels locally can inhibit the work that we do in our planning system to make sure that people’s different accessibility needs are taken fully into account. The report shows that that is not only about the physical, built environment but about communication tools as well. We are talking about a community that already faces significant challenges in navigating daily life also having to fight for access to their own medical information. We can and must do better.

I am concerned at the lack of progress. RNIB Scotland flagged up the issue in 2010, in previous research, so I will be interested to hear from the minister why we are a bit stuck and what we can do to help health boards to make some progress. Will there be some nationally co-ordinated action?

We all have constituents who would benefit from real progress. Hopefully, tonight’s member’s business debate could be a real turning point, so that we can realise that progress.

18:16  

I am pleased to respond on behalf of the Scottish Government. I add my thanks and congratulations to Stuart McMillan for bringing the motion for debate, and I pay tribute to his long-standing work.

We all share the goal of improving access to assessment, care and support for people with visual impairment. The Government is absolutely clear that blind and partially sighted people in Scotland should be able to get the information that they need in accessible formats.

We welcome the report from RNIB, which is one of the UK’s leading sight loss charities and the largest community of blind and partially sighted people. It is an inspiration in the field and has worked very closely with us to influence and progress the recommendations in the Scottish Government’s see hear strategy, which closely align with the recommendations in the report. The strategy, which launched in April 2014, provides a framework of recommendations with which to improve services and opportunities for people in Scotland who have a sensory impairment.

We have created a network of see hear leads, and we have allocated almost £4 million of funding to support their local partnership and to develop and deliver initiatives and services. Progress includes funding 200 sensory champions to receive training in different communication types, languages and equipment in order to support people who have a hidden or undiagnosed sensory loss—for example, people with a learning disability or a condition such as dementia or stroke. The champions take the training back to their workplaces, which might be care homes, and share the learning with their colleagues.

We have also developed and introduced accessible training resources for professionals and agencies in the form of e-learning modules on sight awareness and deaf awareness. Those modules are available to health professionals on the NHS training platform, and they are also available to the general public.

We have developed see hear kit bags, which are available to all social work teams in adult and older people’s services and occupational therapy. They are also held in seven Police Scotland bases across Fife. They include a signature strip to support visually impaired individuals to sign their name; an amplifier, which is controlled by the adult and allows them to hear conversations and engage in discussion; and a magnifier, which helps individuals with visual loss who may need to have print enlarged to allow them to read.

We know that those actions make a positive difference to people’s lives. Promoting the rights of disabled people must be central to everything that we do, and tackling inequality is one of the Scottish Government’s top priorities. We must ensure that disabled people benefit from all that we are doing to improve the lives of the people of Scotland, as they continue to experience inequalities and barriers to independent living. My heart warmed to hear the cross-party support and encouragement for that. That is why the charter of patient rights and responsibilities is such a useful tool—it summarises what people are entitled to when they use NHS services and receive NHS care in Scotland.

The charter makes clear our expectation that everyone should be given information about their treatment and care in a way that they understand and in a format or language that meets their needs. When the charter was revised, last summer, the Government wrote to NHS boards to remind them about its obligation under the Patient Rights (Scotland) Act 2011 to make copies available, without charge, to patients, staff and members of the public.

Let me be clear: this Government takes very seriously the rights of everyone who uses the NHS in Scotland. Creating a fairer and more equal society is a priority, and our ambition to achieve equality for all goes hand in hand with our ambition for a strong economy. We believe that a fairer Scotland can be realised only when we secure equal rights for everyone. We recognise that effective solutions to the problems and barriers that are faced by disabled people must be drawn from the lived experience of disabled people, as is highlighted by the experience of those with sight loss who were interviewed for RNIB’s report. The case studies in the report make it absolutely clear how important it is that information is available in many ways that take into account everyone’s differing needs, as patient confidentiality is breached when individuals have to rely on carers, relatives or friends to read appointment letters on their behalf.

The Scottish approach to service design means that people will be engaged in co-designing products and services that will meet their needs and deliver sustainable and fit-for-purpose service models. We therefore committed to working with disabled people to develop the policies and approaches that are required to solve problems and dismantle barriers. We have high ambitions for the change that we want to see—and disabled people have the right to nothing less. Indeed, the report highlights lots of good examples of systems that work and that have solved problems. We want to learn from those examples and see solutions embedded consistently across the country, with all boards engaging with sight loss organisations to provide a more person-centred approach.

I welcome the report and accept the recommendations, as there are clearly improvements to be made. I have instructed my officials to write to boards again in order to remind them of their duties under the Equality Act 2010 and their responsibilities as summarised by the charter of patient rights and responsibilities. Officials will ask health boards to review the policies that they have in place to support people with sight loss, to protect patient confidentiality and to make websites accessible for all. In addition, through the work of the national network of see hear leads, we will work across authorities to support boards to determine how to address the barriers that blind and partially sighted people currently experience; to raise awareness of the rights that people with sight loss have; to improve access to healthcare facilities; and to provide accessible health information.

I thank everyone who participated in the debate in such a collegiate way. It is good to see such cross-party support for the report. I also thank RNIB for its comprehensive and informative report, and I reaffirm this Government’s commitment to improving access to information, care and support for people with sensory impairments.

Meeting closed at 18:23.