1 Respond back to NHSE in relation to:

• Communication barriers.
• Reduced patient engagement (activation) in their care.
• Workforce’s conscious & unconscious biases.
• Biases that are embedded across the system.
• Transitions of care.
• Inaccessibility of care (including digital exclusion, and geographical isolation).
• Limited insights/data.

2 Adapt their existing Equalities Impact Assessment to reflect this new tool.

3  What specific next actions are you taking as a team that can publish as part of the patient safety health inequalities roadmap? E.g,

• Adapting existing Equalities Impact Assessment (EQIA)/Project/programme plan.
• Creating new SMART objectives/programmes of work/targets.
• Revisiting the data/evidence base relating to inequalities or updating your monitoring process.
• Revising/expanding the scope of ongoing stakeholder involvement.

Hi Mandy, can you tell us more about yourself and your role?

I have worked as a Community Learning Disability Nurse and counsellor for people with a learning disability since 1995.  

In the last few years, my role has involved completing mortality reviews for the NHS service improvement programme LeDeR (Learning Disability Mortality Review Programme), as well as leading a project to support health initiatives and improved health outcomes for adults with a learning disability in Primary Care.

What are some of the health inequalities affecting people with a learning disability?

People with learning disabilities face serious health inequalities and have lower life expectancy, dying on average 25 years sooner and often from treatable and avoidable conditions. 

They experience higher levels of physical ill health and often present with complex and multiple health conditions, including:

• hearing and visual impairments
• epilepsy
• early onset dementia
• constipation
• respiratory conditions.

People with a learning disability were also found to be 4.5 times more likely to die from Covid-19.

They are most likely to die from respiratory related conditions but also less likely to access immunisation screening programmes, including flu. Access to National cancer screening programmes is equally poor.

What are the barriers and challenges to improving outcomes?

There are number of challenges when making improvements in this area. Below are a few key things to consider when seeking to design a patient-centred experience for people with learning disabilities.

• People with a learning disability often experience communication difficulties, which limit their ability to express pain, discomfort or feelings of being unwell. This can lead to delays or problems with diagnosis or treatment, identifying their needs or providing appropriate care. 
• Medical appointments also often go out in written format, which is difficult for people who have limited reading ability, and this might result in missed appointments. 
• People with a learning disability might struggle to engage with a particular test or medical intervention due to lack of understanding and fear, all of which have the potential to create additional barriers and cause delays in diagnosis and treatment.
• There can be confusion about mental capacity and consent amongst medical professionals.
• Health concerns are also sometimes attributed to the person’s learning disability and behaviour, and not fully investigated.
• Attending busy GP practices or vaccination centres might prove problematic due to long waits, high noise levels and lots of people.

“My son would not have coped going to a hub. Having the vaccine at home by someone who knew how to talk to him was brilliant.” Parent.

What can GPs practices do to improve health outcomes for people with a learning disability?

Make sure your records are up to date

Identification of people with a learning disability within each GP practice is key as this enables the right people to be targeted for specific learning disability initiatives, like the Learning Disability Annual Health Check or immunisations. If the patient requires any “reasonable adjustments”, such as easy read correspondence or longer appointments, this information can be flagged on the patient’s medical records. Sharing the register with Adult Social Care and regular cross-referencing data will help to support accuracy.

Equip yourself with the right knowledge and networks

People with a learning disability are often a very small percentage of a GP practice caseload and staff might have limited experience and understanding of their needs. Learning Disability Awareness training, as well as good access and close working relationships with the local Learning Disability Team, are essential to support person-centred care. Learning Disability Nurses are ideally placed to work alongside Primary Care and provide on-going guidance, help and support.

“The learning disability liaison role has been so helpful particularly at a time when inequities for people with LD are having a spotlight shone upon them. Having someone who understands the complexities involved and can offer advice and training for our primary care teams is invaluable and has really helped to increase the physical health checks in this population and ensure good COVID vaccine uptake.” Salford GP.

Build trust and make adjustments

Building a relationship of trust, flexibility and giving a person with a learning disability time to express their concerns, absorb information or ask questions in a way that works for them is essential. Using accessible information to support communication, demonstration of equipment, repeat or longer appointments, availability of home visits and application of Mental Capacity Act Principles can help to improve understanding and engagement, develop trust and significantly support effective care and treatment.

(Above photo: Sean Dempsey receiving his Covid vaccination)

“Mandy came to my house. It helped that I already knew her. She made me feel more confident and helped me feel calm, just by being herself. It was brilliant, it will keep me safe.” Sean Dempsey.

What needs to happen nationally to improve health outcomes for people with a learning disability?

Mandatory Learning Disability Awareness Training has literally just been launched for all Health and Social Care staff (Oliver McGowan Mandatory Training in Learning Disability and Autism) which is huge progress.

In addition, I would like to see:

• Investment in the recruitment, training and employment of more learning disability nurses
• Recruitment of Learning Disability Nurses in general medical settings e.g., hospitals and Primary Care
• Investment in programmes/initiatives to support application of reasonable adjustments in specific areas of care e.g., dedicated screening services for those that cannot access mainstream services (breast cancer screening, cervical cancer screening).

What is the most rewarding part of your work?

There is no greater feeling than seeing a person with a learning disability access a medical intervention/treatment that could improve their well-being or potentially save their life.

Especially when this was initially ruled out due to concerns about complexity or engagement.  

It is extremely rewarding to know that each of these successes help to change and positively shape the opinions and practice of medical professionals into the future.

Do you have a patient safety story to share? 

Are you a patient, relative or member of staff interested in improving outcomes for people with a learning disability?

If you would like to share your insights, please comment below (activate your membership for free first) or get in touch with us directly by emailing content@pslhub.org

• Rural and remote areas experienced problems that differentiate them from their more urban counterparts even before the Covid-19 pandemic. However, the pandemic has both exacerbated some of these challenges, as well as thrown up new ones. 
• Covid-19 has had a more detrimental effect on hospital waiting times in rural and remote trusts than for trusts in more urban areas. In April 2020, the proportion of patients seen for their first consultant appointment for cancer fell by two-thirds (66%) in rural trusts compared with April 2019, whereas a decrease of 59% was seen in trusts located in more urban areas. 
• Activity has fallen particularly dramatically in rural areas. Emergency admissions in April to June 2020 fell by 57% in rural trusts compared with the year before, while they fell by 45% elsewhere. The level of referral for talking therapies – via the Improving Access to Psychological Therapies (IAPT) programme – in rural areas was below half the level in April 2020 than it was a year before. 
• The pandemic has exacerbated workforce issues in remote trusts. Remote trusts spend more on temporary staff (8% of their staffing budget) compared with other areas (6%). While the number of hospital and community health staff increased by 7% nationally in the year to June 2020, the workforce of remote trusts grew by only 5% over the same period. 
• The underlying financial position of rural and remote services was worse than the position of more urban trusts before the pandemic started, and the pandemic may well have exacerbated this. Remote trusts’ debt was equivalent to more than half (56%) of their annual operating income in 2018/19. Remote trusts also typically do not seem to get their fair share of additional funding that goes into the NHS.

• In England, Scotland and Wales, life expectancy and healthy life expectancy at birth are lowest for people living in more deprived areas.
• On average, people in the most deprived 10% of local areas are expected to live a shorter life than those in the least deprived areas. They are also more likely to spend more of their life in poor health.
• Of these three countries, Scotland has the largest difference between people in the most deprived 10% of local areas and those in the least deprived. This is true both for healthy life expectancy (25 years for men and 21.5 years for women) and life expectancy (13.3 years for men and 10 years for women). It is followed by England and then Wales.

• Before the pandemic, the White group had higher rates of elective procedures overall than the Black, Mixed and Asian groups, with the White group having almost a fifth more procedures than the Asian group per head of population. Cardiac and cataract procedure rates were highest in the Asian group and dental procedure rates were highest in the Black group.
• Procedure rates during the first year of the pandemic fell in all groups, with the NHS carrying out around 2.7 million fewer operations and tests in that year compared with the year before.
• However, the falls in activity were not uniform across the different ethnic groups, with the Asian group experiencing the largest overall fall in the first year of the pandemic compared with the other groups (a fall of 49% for all procedures compared with 44% for the White and Black groups). This means that if the proportional fall in activity was the same for the Asian group as it was for the White group, we would have expected to see just over 17,000 more procedures for the Asian group.
• Although the gap narrowed in the second year of the pandemic, there was still a larger deficit of care among the Asian group, with the fall remaining 2% larger for the Asian group than for the White group – an estimated deficit of 6,640 procedures.
• Apart from the Asian group, consistent differences were not found across procedures for other ethnic minority groups. The Black group did have larger rate falls than the White group for cardiac and cataract procedures (the fall was 19% larger for cataract procedures) but otherwise saw similar changes to the White group, including for all procedures taken together.
• The most deprived groups in the population experienced larger rate falls overall and for most specific procedure groups. For hip and knee replacements, there was a 13% larger fall in the most deprived group compared with the national change, and a 7% lower fall in the least deprived group.
• There was no relationship between the fall in elective hospital activity and the local impact of Covid-19 by region (as measured by reported Covid-19 cases and Covid-19 admissions).

• there are many health-related metrics, such as number of preventable deaths, that increase as deprivation increases.
• there are several health-related metrics, including life expectancy and those receiving support from GPs, which decrease as deprivation increases.
• many health-related metrics—for instance people taking up NHS Health Check invitations and access to NHS dental services—do not correlate with the level of deprivation.

The article argues that getting a better understanding of these relationships can help to underpin strategies to improve outcomes and drive improvements in population health.