Thirty years elapsed between the first UK wide policy strategy relating to people with learning disabilities and Valuing People in 2001, in this time we saw the a major shift from medicalised, institutional care to a greater focus on community living, where O’Brien’s service accomplishments (1992) characterised contemporary life for people with learning disabilities. Almost twenty years on from Valuing People, it is an appropriate time to reflect on what has changed, and what should change moving into the 2020’s?

This conversation has been prompted by NHS England’s focus on people with learning disabilities and/or autism as one of their four Clinical issues– others being Mental health,Cardio-Respiratory and Cancer for a ten year plan. It comes at a time when the three main current programmes – LeDeR, Improving Health and Lives / Public Health Observatory, Transforming Care – are due to close or complete in their current guises. As such this is an apposite to be involving and engaging everyone in considering what ought to happen next, to establish a vision for quality that can be shared across England and beyond.

The wide ranging consultation is not limited to people with learning disabilities and the other three areas for clinical focus, but also cross into life stages and improvement enablers, including workforce, digital care and research. Details for this can be found here

Polls 

Poll 1 indicated that while the majority self-identified as having a primarily professional interest in the chat, there was a group of family carers and people with autism. No-one identified as having a learning disability. WeLDNurses acknowledges the latter issue, and has grappled with this for sometime, we noted that there were those that had suggestions and ideas as to how work on this, we will be following these up. While we do not have comparative data we can say with a degree of certainty that new family carers and organisations joined the conversation last night based on the increase in followers. It was also observed that at least 10% of respondents would have ticked two boxes were that options available, as several self-identified‘professionals’ were also family carers, and or autistic.

While the ten year plan is primarily limited to England, Twitter is not bound by geography in this way, as such to understand that 73% of the respondent’s advised they reside in England was helpful. However, the transcript does not discriminate between those contributing from outside England and nor would we want to exclude their voices in this conversation, however conversations have been themed in the below blog, with specific contributions added as evidence.

Emerging from the chat were several themes that link to particular stakeholder groups, some that were pertinent to combinations of groups and one or two that were universal. This links with Poll 1 and the observation that many have more than one interest in this chat.

Language and World View 

A running question throughout the chat drew on our knowledge and appreciation of learning disability and autism in the broadest possible sense, a human view point, participants questioned whether use of language – Autistic Spectrum Condition/Disorder indicated a medical perspective that was not only unhelpful, but erroneous. This re-emerged later in the discussions as to whether the National Health Service - an organisation that primarily responds to people with physical and mental ill health – was the most appropriate to respond to issues that are not necessarily the domain of pathology and rehabilitation, while another suggestion was to make a direct link between the Transforming Care Programme and NHS England’s Personalised Care programme.

Aligned to this was a conversation about the notion of a universal solution, where specialist knowledge a skills would not be required. An example of the challenges, and frustrations of having a specialist tools could be elicited from the example of Richard Handley, who had a Healthcare Passport, but this was not to have a positive influence on his care and eventual; death.

Access & Adjustments in the mainstream

Many comments were made both by families and people with learning disabilities and autism, that their experience of using healthcare services was one of fear, anxiety and agitation. In particular high intensity, or low intensity and low predictability environments, Accident and Emergency and outpatients were picked out as places that caused the most concern, as they tended to be the front end of a pathway of care, but were not always attuned and attentive to attain enough information with which to work, which could cause delays in diagnosis.

Leverage and Legislation 

While most campaign documents, policy and evidence indicate the UK has enough legislation to uphold the rights of people with learning disabilities and/or autism, the question was rightly posed how we ensure that these frameworks are employed effectively and in the spirit of the law.

There was mention of the upcoming publication of the NHS Benchmarking’ s work which will ensure all NHS Trusts have an allocated Board member responsible for their organisations self-assessment against NHS Improvement’s Learning Disability Standards which will have learnt lessons from the previous regulators self-assessment standards.

Linked to this was participants role with influencing politicians and getting involved in local politics as a leverage and sustaining awareness.

Children and young people

Several parents and families talked of the issues and challenges of having their young people assessed appropriately, and within sufficient time; by way of an example one contributor identified a two year timescale for autism assessment from their local Children and Adolescent Mental Health Services. This was further compounded by the various concerns about the care and support that newly diagnosed children and their families can expect, there was clear recommendations for more opportunities for peer support and family advocacy being available.

Services and working together

Many parents and family carers articulated the challenges they faced in knowing what to expect from particular organisations and how they might work with other services that have a similar interest in the person and their care. Postural care was cited as an issue that was significantly dependent on several professionals representing different organisations working together, with the risks to individuals increasing without coordinating leadership.

Workforce, Education and Training

Much has been discussed about training the mainstream workforce in the previous months. The LeDeR Annual Report published some disappointingly familiar recommendations. Support for education and training among mainstream healthcare professionals has been spearheaded by parent carer and activist Paula McGowan, who’s autistic son Oliver died partly as a result of adjustments not being made for his autism. Education for mainstream healthcare professionals was previously required by the regulator, and clarity will be required as to how this education might be designed, implemented and evaluated and monitored.

Discussion relating to an evaluative publication of reasonable adjustments education targeted at mainstream professionals indicates that co-creating the package with local experts by experience, applying creative and experiential methods to engage professionals to be prepared to make adjustments is important.

Several participants indicated that the current workforce may well have transferable skills to manage the individual clinical issues, however there were concerns relating to the volume,and the current workforce in training. Consideration was also made to hybrid roles, like GP with Special Interest and Nurses with particular specialisms,with sufficient teaching skills.

Within this period of consultation,it will be vital to be planning new methods for enabling locally based person centred evaluation tools that enable comparison and contrast with other groups of patients in mainstream healthcare services, while also having a greater sensitivity to different groups enabling mainstream organisations to identify issues and respond to them.