Confidential Inquiry into premature deaths WeLD Nurses tweet chat with authors and the LD Elf


On Wednesday 30th October, we were privileged to join a tweet chat hosted by #weldns. Also joining the chat were Matt Hoghton and Pauline Heslop, two of the authors of the Confidential Inquiry into premature deaths of people with learning disabilities.

The chat began by reflecting on some of the key findings of the report, for example that Women with learning disabilities died on average 20 years earlier than women in the general population and that men with learning disabilities died on average 13 years earlier than men in the general population.

Matt Hoghton pointed out that it is still unclear why women died younger than men – the reverse of what is found in the general population.

There was a good deal of shock and anger expressed at the findings, in particular ‘avoidable’ causes of death and concern that people were not getting access to appropriate supports.

Some people were interested to know if the deaths identified in the Inquiry were across all settings and it is clear that they are – from a range of settings and range of severity of learning disabilities.

Matt also pointed out that other research has shown that young women in urban environments are especially vulnerable (Tyrer et al. 2007 – A population based study which found that of 2436 adults identified, 409 (17%) died during 23,000 person-years of follow-up. They found that at particular disadvantage were people with Down syndrome and women with ID living in the city.)

Reasonable Adjustments

One of the key themes that emerged was the need for reasonable adjustments – WeLD Nurses posed the question – “We know at this point that reasonable adjustments have to be made. How to we drive this forward? What is our role?”

Some of the responses included

  • To help identify what reasonable adjustments are needed and to offer support to ensure these are made
  • To help to ensure when they are made they are embedded in everyday practice
  • To challenge organisations when the only response to the need to make adjustments is to offer the provision of ‘accessible information’
  • To ensure that whilst reasonable adjustments are individual to each person, information about them should be recorded shared
  • To act as mentors, striving for excellence and ensuring that students understand parents are experts in their children
  • To insist on the provision of reasonable adjustments, to understand th Mental Capacity Act. Speak up…loudly. Be proactive. AND Look after yourself too

The Improving Health and Lives team have a Reasonable adjustments database on their website which can be found at:

LDCI pointed out that from next year services will be required to audit the provision of reasonable adjustments, but it was interesting that few people were aware that this was going to happen.

This requirement can be found in the NHS standard contract for 2014/15 which states that:

The Provider must carry out an annual audit of its compliance with this obligation and must demonstrate at Review Meetings the extent to which Service improvements have been made as a result.

There are four questions currently being piloted in hospitals which are:

  1. Do you have anyone with an LD in hospital at present?
  2. What reasonable adjustments do you make for people with LD?
  3. Do you have a specialist nurse for LD?
  4. Do you audit the care given to patients with LD?

Access to diagnostic investigations

LDCI pointed out that the “most common reported problem when people with learning disabilities were unwell was that investigations were not done or posed difficulties” as it was sometimes difficult for some PWLD to access diagnostics in acute services

Ross6479 asked whether more routine tests/screening could be completed by LDNs to avoid referrals and waiting time and there was some agreement with this view.

What is our role in ensuring appropriate reasonable adjustments are made?

What is our role in ensuring appropriate reasonable adjustments are made?

Coordination across agencies

One concern raised was a lack of coordination across agencies involved. Salsa442 said “Research has shown the more agencies involved the greater the risks, that’s why communication is so important.”

Parents and Carers

A concerning finding of the inquiry was that parents and carers were often not listened to, which flies in the face of everything we know about good partnership working.

Some thoughts on this were:

  • One family member said they thought that many people with learning disabilities “often don’t have what I call ‘body-mind-maintenance competencies’
  • One person suggested the provision of Acute liaison nurses in every hospital to bridge the gap between acute staff and carers
  • advocacy was identified as key  as carers/ family members often notice subtle changes in the person  that are missed by professionals

The Inquiry team found that people who were without close friends/support were more likely to die from cause of death amenable to good health care, so this raised concerns about how we should take account of and respond to this additional vulnerability.

One person pointed us to a resource on the patient experience website where a woman with learning disabilities talk about her treatment and the help she got from the Community nursing team for her bowel cancer diagnosis see

A concerning finding of the inquiry was that parents and carers were still often not listened to

Parents and carers are still often not being listened to


Named Healthcare Coordinators

One of the recommendations of the report was that named healthcare coordinators should be allocated to people with complex or multiple health needs. This was roundly supported by contributors, but it was pointed out that the coordinators must be identified by the person or carers and not arbitrarily assigned. The professional role of the coordinator was also discussed, but the prevailing view was that this might be different for each person supported, depending on their needs and circumstances.

@care2twit pointed out that 2As a carer I think having a Named Professional and also ensuring Annual Health Checks is a good start.”

Mental Capacity Act

There was a good deal of concern expressed by many people about a continuing lack of understanding of the mental capacity act in healthcare settings. There was a good deal of support for Mental Capacity Act training and updates to be mandatory for health and social care staff, with active follow up on the ground. Many of the contributors talked about their key role in providing training, but also modelling behaviour.

Better Information

Matt Hoghton suggested that there was a need to “link GP registers with mortality data so we know age and cause of death of people with ld nationally” The Inquiry team had recommended the establishment of a National Learning Disability Mortality Review Body.

Examples of good practice

In addition to the RA database on the IHAL site, Norah Fey research centre also has examples of actions being taken locally and regionally which can be found at:

What will you change in your practice?

Finally, contributors were asked what they could do to change their practice and improve outcomes for people. Here are a few of the suggestions:

  • LDCI pointed out that the “recommendations of the Confidential Inquiry are for everyone to reflect and take action not just for Govt or NHS England.”
  • Need to focus more on follow-up of MCA training
  • Check up on response locally to the requirement for providers to undertake an annual audit of RAs which is in the NHS Standard Contract for 2014/15.
  • Ensuring my practice is proactive not reactive
  • Be sure to improve MCA awareness and RA where I am
  • As a student I talk to my IPL groups about LD nursing and related topics regularly to raise profile
  • Carer involvement useful here for extra training about LD understanding not so
  • Getting communications team locally to send out recommendations from the Inquiry report recommendations to all departments in the trust
  • Work with my Acute Liaison Nurse colleagues to review our strategy for PWLD. Voice of the individual at the front, Carer expertise included
  • LDCI pointed out that four new questions are to be trialled at CQC inspections of acute hospitals, specifically about care of people with learning disabilities.
What will you change in your practice?

What will you change in your practice?

Finally Matt, pointed out in a very philosophical tweet

No person can change the world but we can change the world for one person”, which was a great way to draw the conversation to a close.


You can read the transcript of the chat at:


Tyrer F, Smith LK, McGrother CW, Mortality in adults with moderate to profound intellectual disability: a population-based study, in Journal of Intellectual Disability Research : JIDR [2007, 51(Pt 7):520-527] [abstract]

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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