Health and Social Care Bill

My Lords, I want to speak to Amendment 347B to Clause 247. It teases out the kind of argument made by the noble Lord, Lord Warner, in a more specific form. This probing amendment has the aim of finding out more about the Government’s approach to information provided to patients in accessible forms. Perhaps I have missed something, but I could not find much in the Bill about the provision of information to patients, but given the importance of the principle of ““Nothing about me without me””, this would seem to be a serious omission. The provision of information in a form that people can use is a sine qua non of patient empowerment. It allows patients to take control of their situation. Without it, you can hardly get to first base. Maybe the Bill could do with some fleshing out in this regard, and I would certainly welcome the Minister’s views on that. In the rest of my remarks I want to concentrate on the question of providing information in a form in which people can use it. My particular angle on this is that it should be published in an accessible form so that people with a print disability can handle it, which is what my amendment deals with. It would enable the Secretary of State or the NHS Commissioning Board to publish information standards containing a requirement to record patients’ preferred reading format, whether standard print, large print, audio or Braille. This is an essential precursor to communicating effectively with patients who have print disabilities and giving them proper access to vital information about their health. It will immediately be clear that I have a direct personal interest in this, but I should also declare my interest as a vice-president of the RNIB, the leading charity representing the interests of blind and partially sighted people, for which improving access to information is a major objective of policy and campaigning. I have raised this issue regularly in the House with cross-party support in debates on local democracy, local transport and other issues, and the matter was dealt with generically in the Equality Act 2010. Ministers have invariably been sympathetic, but I am sorry to say that we still have some way to go in making the provisions of that Act a reality in practice. Article 21 of the recently adopted UN Convention on the Rights of Persons with Disabilities on freedom of expression of opinion and access to information, which the UK has ratified, says that states parties should be, "““providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost””." Yet in the area of health services it is not so long since a survey of blind and partially sighted people in the UK showed that 95 per cent of respondents had never received health advice leaflets or information from their local surgery in their preferred format; 96 per cent had never received letters from their GP, the results of tests or other correspondence in their preferred format; 95 per cent had never received medicines labelled in large print; and the NHS was apparently unable to send out appointment letters in an accessible format. Research for the RNIB carried out by Dr Foster in 2010 showed that things had improved a bit in recent years but that there was still a considerable way to go. In the Dr Foster survey, 72 per cent of those questioned were given information by their GP in a form in which they could not read it. Similar, even higher figures were uncovered in relation to the rest of the NHS. This included information ranging from appointment letters to confidential test results, which is not the sort of thing that you would necessarily want someone else to read to you. I recently moved house and joined a new GP practice. I was pleased to be asked on the form that I was required to complete in order to register whether I would like information in Braille. This was as novel as it was gratifying. I do not delude myself that this amendment would be a panacea, but it would take us a long way further forward than the guidance that we have at the moment, which clearly is not working.