My Lords, Amendment 7 in my name focuses on the proposed duty in Clause 3 to share information between health professionals and social care professionals. I apologise that I was out of the country during Second Reading and was unable to speak. I congratulate the noble Lord, Lord Ribeiro, for championing the Bill through the House. I also thank the noble Lord, Lord Hunt, for supporting this amendment, together with the noble Lord, Lord Low, who unfortunately cannot attend today.
From my own research and the work of the confidential inquiry into the premature deaths of people with a learning disability, I know that there are some appalling patient safety outcomes for people with learning disabilities, where improved information sharing has a real prospect of helping. Data scaled up from the
confidential inquiry show that 1,200 people with a learning disability die avoidably in NHS care every year. In many cases this is due to poor or inadequate care or diagnostic overshadowing, where, put simply, professionals fail to see past the learning disability to what is really affecting the patient, may not recognise that the person has a learning disability, or may have had no training on what a learning disability is.
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Competent information sharing on people’s conditions and treatments will help address some of this but it is critical that information about people’s communication needs is also shared. This is the crux of the amendment, which is probing by nature, and I hope will lead to reassurances from the Minister that the communication needs of disabled people will be given the required focus in the guidance associated with the Bill. I am supported in this by the Royal MENCAP Society, the National Autistic Society, RNIB and Sense, which provided a very helpful briefing that I understand has been circulated widely.
It is vital, and seemingly obvious, that doctors, nurses and those working in care should communicate effectively with patients, or the people they support. This might be so that a patient understands their diagnosis, any decisions they might have to make, any instructions accompanying medication and so on. The best way of communicating will, of course, vary. Some people with a learning disability might, for example, need information about medication in an easy-read format with pictures and simpler text. People who cannot read at all may need the information just in pictures, and someone with a visual impairment might need instructions in large print or Braille. Others may need an advocate, family member or interpreter to be present to support them in discussions with clinicians. I refer here to my interests as laid out in the register.
The importance of sharing details about people’s communication needs is brought into sharp focus in a story given to me by MENCAP. The family has asked that the identity of the young lady in question should remain anonymous. She died in 2012, after being in hospital for less than a month. During that time she lost a stone in weight. No alternate feeding route was considered for her until shortly before she died. No information about her communication needs was available. No best interest meeting was held, as required by the Mental Capacity Act, on how to communicate better with her or on any reasonable adjustments that would have benefited her. She said no when asked to undergo a vital diagnostic test and staff assumed that she had refused consent. In fact, this was what she always said when she was confused or did not understand. Her surgery a week later found complications that would have been detected by those tests. She died shortly after. These issues all stemmed from a lack of understanding about her communication needs and reasonable adjustments that she needed. It is quite likely that if this critical information had been made available to the right professionals, her death might have been prevented.
I will take this opportunity to talk about the mechanisms by which this critical information might be shared effectively. More and more disabled people
are supported to use very practical tools such as communication passports, hospital passports and care plans. This is good news. We also expect publication by NHS England of an accessible information standard later this year. It would not be difficult for health and care professionals to include copies of relevant communication tools when referring people to specialists. One way is via the summary care record. As the Minister will be aware, 90% of people in England already have a summary care record which contains some quite basic information. Is there any reason why information about a person’s communication needs could not also be uploaded by the person’s GP to the summary care record? Once uploaded by the GP, the information will always be there for other health professionals to access.
There is one small word of caution. Many GPs are still unfamiliar with the communication needs of people with learning disabilities and the communication tools that can facilitate access. Is the use of the summary care record something that the Minister could consider including as a requirement or recommendation in guidance? I hope that such an expectation would also lead to the skills gap that I have identified being addressed.
In concluding, I reiterate that there is an opportunity here to improve the experience of disabled people in hospital and care settings through a greater understanding among professionals of their needs. I hope that the Minister can provide reassurances today and that guidance will reflect this. I hope also that the noble Earl will commit to an ongoing dialogue with the charities that I referred to earlier, the professionals with expertise in this area, and, of course, disabled people and their families.