As a 70-year-old parent of 39-year-old twin sons, one with mild and the other with profound learning disabilities, I was saddened by but welcome the disturbing Mencap report (NHS accused over disabled patient deaths, 3 January) alleging unnecessary suffering or deaths of at least 74 patients with a learning disability because of poor care that reveals enduring "institutional discrimination" among doctors and nurses.

On the whole my sons have had excellent NHS care, although once while visiting my hospitalised son I found him unshaven and unable to feed himself while his food remained on a plate in front of him. My wife and I have regularly come across healthcare professionals with little or no knowledge of people with a learning disability, and this is also quite widespread in the community at large. A big worry for all parents of such children is what happens to them when we are no longer here; I, for instance, have recently had a major heart attack. I urgently call on the government to make it mandatory for all healthcare professionals to receive awareness training and to initiate a national public awareness campaign about learning disabilities.
Ken Mack
Wrexham, north Wales

• When my Down's syndrome son was born 44 years ago, an ex-ward sister told us: "We used to put people like him in a draught." Maybe some attitudes are passed down. More recently we have been lucky to have the help of Jim Blair, consultant nurse for learning disabilities at St George's hospital, London, who is doing a splendid job of raising awareness, educating nurses and doctors, and easing the path of patients with learning disabilities through the hospital system. His advice on "reasonable adjustment" has been particularly useful. As far as I know he is the only consultant nurse for learning disabilities in the UK. There should be funding for one in every hospital.
Sue Hubbert
London

• The provision of pain relief for children and young people with learning disabilities has for many years been neglected. There are assessment tools which help in the process but they are often not used or understood. In this age where the ability to effectively manage pain is neither expensive nor time-consuming, a number of simple things would lead to great improvements. The most important thing is for health professionals to ensure parents/carers are always involved in all aspects of care and that they are listened to. They are the experts. The ludicrous notion of visiting hours that we adhere to must be abandoned, so that families can continue with the care they effectively administer at home. NHS trusts must ensure without delay that there is training and education on how to communicate with those with learning difficulties and how to manage pain. Advocates or liaison personnel in each trust must be appointed so that families have a central point with which to communicate.

When issues arise, parents and carers must feel confident that their concerns will be taken seriously and addressed. If the Healthcare Commission is outlining how trusts are performing, this must be one of its key indicators – it is a basic human right.
Liz McArthur
Clinical nurse specialist paediatric pain &and sedation (retired), Currie, Midlothian