Written evidence from Jim Blair [NDS0043]

 

Healthier Futures: Addressing the health inequalities faced by people with a learning disability and their families.

 

Submission of written evidence compiled by Jim Blair for the Women and Equalities Committee Evidence session held on 26.4.23 and focusing on health inequalities experienced by people with learning disabilities.

 

Jim has worked as a learning disability nurse since the mid-1990’s he has held positions in the community, acute, university and forensic sectors. Jim has worked across and within services to evolve them effectively to deliver the care and treatment with and for people with learning disabilities and their families (a fuller biography is on the Select Committee website)

 

The information below is in addition to my oral evidence given before the committee on 26.4.23. I am also submitting the following documents, on behalf and with the permission of the authors:

 

The aim of these submissions is to highlight the difficulties faced by individuals with a learning disability and their families in accessing healthcare effectively and then undertake n to address these issues and the impact this has on the quality of life and the life expectancy of people with a learning disability. It considers and refers to the direct lived experience of people with a learning disability and their families / carers. Solutions are outlines and actions that could be put in place a

In this submission the focus will be on:

This report contains quotations from people with learning disabilities, parents, family members and professionals. The overwhelming impression that evolves is of an extremely difficult and challenging experience when navigating through the various care networks.

 

People with a learning disability frequently have a shorter life expectancy than that of the people without a learning disability (LeDer 2021). People with a learning disability have a median age of death of 62; this is 21-24 years younger than people who do not have a learning disability. Yet in 2013 women with learning disabilities died on average 20 years than women who did not have a learning disability and men with learning disabilities 13 years younger than men who were not learning disabled. Confidential Inquiry into Premature Deaths of People with a Learning Disability 2013) This shows that in the past decade things have been getting worse for people with a learning disability.

 

The reasons for shorter lives are largely down to:

•          Delays or problems with diagnosis or treatment

•          Problems with identifying needs

•          Difficulty providing appropriate care in response to changing needs.( Confidential Inquiry into Premature Deaths of People with a Learning Disability 2013

Though this was from 2013 the reasons as set out still ring true as has been evidenced by the many LeDer reports in the past 10 years or so

Many of the comorbidities that are prevalent amongst people with a learning disability could be prevented if health services, settings and staff were fully equitable and accessible.

 

There needs to be a greater focus on prevention rather than cure. Investment is required in ensuring that there are more learning disability nurses. It is essential that if the health and well being is to be improved there needs to be greater awareness that certain health conditions are more prevalent among people with a learning disability and to make sure GP’s look out for these things such as constipation, diabetes and epilepsy. Care and treatment need to be adapted to ensure more effective outcomes and reduce inequalities.

 

Equal treatment does not mean treatment should be ‘the same’ as highlighted in the Equality Act of 2010 in which reasonable adjustments are a duty. Such adjustments can certainly ensure and address inequalities but are often not regularly employed adequately enough nor in a timely manner that is tailored to individual need and requirements. One family member said in relation to reasonable adjustments that they,

‘… should be automatically offered - should not be an afterthought and indeed planned well in advance to ensure the Learning Disability person has the best possible environment…’

 

The challenges start very early for families and often begin with the difficulty of acquiring an early diagnosis of a learning disability.

 

Early diagnoses

Learning Disability

Having an early diagnosis of a learning disability can greatly improve a person’s life experiences as supports etc can be put in place earlier. Unfortunately, this is not always possible and at times especially in paediatric services unhelpful terms such as developmental delay are used when a truer term would be learning disability. Throughout my nearly 30-year career I have had families saying that they thought when told their child had a delay it would mean they would catch up reaching the developmental milestones a little slower than others but getting there in the end. This is sadly far too often not the case.

 

To address this issue parents and siblings have often suggested that learning disability nurses should be key parts of any early screening and support. An individual who has a learning disability stressed the following,’ Every hospital should have the resource for Learning Disability Diagnosis within reasonable timescales - not a wait of a year!’

 

 

 

 

Health diagnoses and wellness checks

Eye health

This example was provide to me by a person with a learning disability and links up to eye health. ‘Early diagnosis, overshadowing - tell you a story of eye care which is a common comorbidity but so easily overshadowed. We know of people who have been thought to have dementia when they had a sight problem! Eye clinics completely overwhelmed at the moment the busiest clinics 10m appointments a year, easy to put the most 'complicated' people at the bottom of the pile for something like cataract surgery they will be people with learning disabilities going avoidably blind. A lot of time people just need sight tests, glasses even a proper failsafe scheme like going into special schools early is under threat now…’

Following up on a person’s health, safety and wellness is important to improving lives and reducing health inequalities. A parent emphasised this when sharing the following, ‘Safe and Well checks report, the physical health inequalities experienced by people who have a specific health need in a specialist hospital setting remain a great concern- supporting more complex health needs, such as dysphagia and epilepsy. ‘

 

Health Concerns

It can be very hard for health professionals to tune into the frequency of the person before them, how the person communicates, what is the best method to employ, what is their health history, how they express ill health- all of these are real problematic situations faced each day by health professionals. That is why it is essential that they engage with the person and those that know the person well and not just go on what is happening at the moment- all you see is not all that there is, as even salt looks like sugar. I have had experiences of people with learning disabilities always saying they are fine to health professionals when in fact they are in a lot of pain because they don’t want to be seen as not being able to cope. One person I know with a severe learning disability and no verbal language used to only hum ‘Three Blind Mice’ but you could ascertain whether he was happy, sad, pre seizure or in pain by the pitch and tone with which he hummed the tune.

 

Improving health and well-being can be achieved by engaging in regular physical activities such as those organised by DanceSyndrome (see paper included with this submission).

 

Diagnostic Overshadowing

All too frequently health professionals fall into traps of diagnostic overshadowing.

Diagnostic overshadowing occurs when a health professional makes the assumption that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors such as biological determinants. Diagnostic overshadowing has been defined as “..once a diagnosis is made of a  major condition there is a tendency to attribute all other problems to that diagnosis, thereby leaving other co-existing conditions undiagnosed.” (Neurotrauma Law Nexus http://www.neurolaw.com/neuroglossary/ )

 

In relation to people with a learning disability Emerson and Baines (2010) highlighted that it means “Symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person’s learning disabilities.”  (Emerson E., Baines. S., (2010) Improving Health and Lives: Learning Disability Observatory) Gates and Barr (2009) noted that diagnostic overshadowing is particularly pertinent when new behaviours develop or existing ones increase. (Gates B and Barr O. Learning and intellectual disability nursing. Oxford: Oxford University Press, 2009) Given that people with learning disabilities have a much higher risk of experiencing a variety of diseases and conditions it is vital that physiological or pathological determinants in behaviour change are explored. If they are not, people with learning disabilities can suffer poor care and may even die when their death could be avoided. Gastrointestinal cancers are approximately twice as prevalent in people with a learning disability and approximately 70% of people with a learning disability experience gastrointestinal disorder. Coronary heart disease is the second highest cause of death for people with a learning disability. (Blair J., British Journal of Family Medicine March/April 2016 pp37-41 (2016))

 

Professionals and parents alike find diagnostic overshadowing very frustrating. An example of this is set out by a parent here:

‘Young people with an autism diagnosis who have Learning Disabilities have everything lumped under autism. My daughters head could be hanging off and the GP would tell me it’s because she is autistic.’

 

A family member said in relation to addressing diagnostic overshadowing and the part it plays in health inequalities a solution would be to,

‘All levels of staff have training and experience and then are tested via an exam, so we are really sure they understand it.’

 

One family member mentioned this in relation to diagnostic overshadowing,

‘Families are, for the majority, the key to information that avoids mistakes and early deaths that are still high.’

To address diagnostic overshadowing what families and people with a learning disability need and want from health and care professionals is well summarised by this comment from a parent.

‘Curiosity about health presentations seems to be stifled by the culture of liability and the only way to break out from this is to bring families in, as real partners.’

Health professionals necessarily must become skilled health detectives when working with people with a learning disability they need to always explore whether an increase in existing or new is due to a physical or mental health issues.

‘Confidence in practitioners to double check, retain professional curiosity and challenge one another is absolutely necessary to improve things.’

A picture containing text, cartoon, sketch, drawing Description automatically generated

It is always vital to be proportionate in responding to situations and interpreting as well as recording them. Far too frequently this does not happen (as illustrated above) and leads to increased inequality.

Learning disability nurses are the only health professionals specifically qualified to work with people who have a learning disability and are extremely well placed to address diagnostic overshadowing.

 

 

 

 

 

 

 

 

 

Learning Disability Nurses

Learning disability nurses possess the fundamental clinical skills of a registered nurse, with additional specific specialist skills, knowledge, attitudes, and values.

At a time when the health inequalities are growing, and the life expectancy is reducing for people with a learning disability the numbers of learning disability nurses are declining significantly as can be seen below.

A graph on a screen Description automatically generated with low confidence

Central roles of Learning Disabilities Nurses;

 

 

 

 

A clear visual representation of the 5 key elements within learning disability nursing is set out in the image below:

 

Learning disability nurses play a pivotal role across and within health and care settings to enhance health outcomes and address inequalities. The roles set out above are my own views of the core purposes of the work learning disability nurses.

A person with a learning disability wanted this to be shared with the Committee about learning disability nurses.

‘Learning disability nurses are crucial but they need to be everywhere in every hospital and in community.’

A parent who stated that ‘learning disability nurses are far too few (but they) should be mandatory like other interpreter services. Further, ‘...people are enabled to have interpreter support in languages and learning disability should be no different, with LD nurses front and centre as key parts of healthcare plans.’

Throughout my career it has been a common theme that families and people with a learning disability value the role of a learning disability nurse. They consistently say that,’ There should be a qualified Learning Disability Nurse on every ward in every hospital for both day and night shifts in the UK.’ Such nurses play a central role in ensuring reasonable adjustments are in place with and for individuals.

 

Reasonable Adjustments

Equal treatment does not mean that treatment should be the same. Adjustments are needed to ensure some people such as those with a learning disability can experience equal treatment. Reasonable Adjustments are a requirement for those with protected characteristics as identified in the Equality Act 2010, which includes people with learning disabilities. Section 20 and 29 (7) of the Equality Act create and elaborate a duty for services providers to make ‘reasonable adjustments’ to enable disabled persons to access their services.

 

Families and individuals with learning disabilities frequently, like this parent, question,

‘How do they define what is reasonable in a reasonable adjustment? This question can be answered by the following:

 

Making reasonable care adjustments - consider:

•          T Time – take time to work with the patient

•          E Environment – alter the environment e.g., quieter areas, reduce lighting and waiting

•          A Attitude – have a positive, solution orientated focus

•          C Communication – find out the best way to communicate with the patient and also communicate this to colleagues

•          H Help – what help does the person need and how can you meet their needs

The TEACH approach was adapted from the one created by Hertfordshire Community Learning Disability Team

 

A parent shared with me that they felt reasonable adjustments,’ should be automatically offered - should not be an afterthought and indeed planned well in advance to ensure the LD person has the best possible environment in which to participate in the meeting.’

 

In addition, this parent highlighted the need for parental reasonable adjustments, ‘The appointment should be at a time that suits people, is long enough for them to ask questions, easy read information should be available before and during the appointment.’

Another parent raised the following ‘..legislation is not well understood by many - how can this be more easily accessed by education, health and social care relevant to learning disabilities?

 

A person with a learning disability shared with me that getting reasonable adjustments, ‘… is a worry about the way people are expected to be able to do things digitally, book appointments, etc’.

Ensuring that reasonable adjustments can be made to improve health experiences and outcomes can start with primary health care experiences especially within the annual health check that is offered to anyone who has a learning disability over the age of 14.

 

Annual Health Checks

Annual Health Checks are an annual health MOT for people with learning disabilities which aim to detect deteriorating health and address issues to improve health outcomes and reduce health inequalities.

 

A person with a learning disability noted the following regarding annual health checks that,’ they are great but it's the quality of them and what happens afterwards .’ Also they highlighted that it is, ‘Not clear how people with learning disabilities are being 'flagged' on the system..’ Without a flag or being on the register it is very hard for people with a learning disability to access annual health checks. The first step towards rectifying this is to accurately identify people with a learning disability using the NHSE guidance on coding (https://www.england.nhs.uk/publication/improving-identification-of-people-with-a-learning-disability-guidance-for-general-practice/)

 

A key problem with the annual health check is that GP capacity is reducing all the time. A possible solution to this could be to provide them within community clinics or pharmacies where community learning disability nurses could regularly assist in the checks ensuring they take place and action is followed up in relation identified health problems. But then this raises concerns about people not being seen by someone they already know, i.e., their GP. A further complicating factor is that there is also no standardised check in place.

 

Throughout life everyone experiences problems when transitioning through the various stages of life. For people with a learning disability these transitions are even more problematic.

 

Transition to adulthood

Becoming an adult can be challenging for many people but for individuals with a learning disability this is often fraught with many more challenges. In relation to moving into adult medical care services a parent highlighted the following to me,

 

‘…the difficulties of transitioning into adult medical services, especially the annual health check which switches from being overseen by community paediatrician to GP.’

 

The loss of a central consultant during transiting from child to adult health services can result in the individual and the parents experiencing the following as one parent sets out:

 

‘The loss of the central paediatric consultant at transition is huge. The GP becomes the specialist and with the best will in the world don’t have the right knowledge. Young people with learning disabilities being on adult wards. DNRs during Covid.’

 

Growing Older

In a recent NIHR funded study ‘Growing Older, Planning Ahead ‘highlights the need ensure that there is:-

 

The study found:

 

Another NIHR project, ‘Flourishing Lives’ recently completed, identified the following core findings:

 

 

 

 

 

Training

To address health inequalities and ensure effective health improvements with and for people with a learning disability one parent summed it up in the following way,

‘Fundamental early training that is transferable is key for teams to be able to understand what it means in terms of approaches for communication, preferences and needs.’

Training programmes should be developed and be set by an accredited body. Anyone who seeks to work with someone who has learning disability must have completed that accreditation and then, in a supervised capacity, be allowed to work people with learning disability.

 

A parent suggested that in relation to training of staff – ‘Learning Disability nurses should be delivering training to people in any Multi-Disciplinary Team as a requirement of upholding the Equality Act and Care Act guidance’.

Training must be built with and for people with a learning disability and family members. The recent mandatory training (Oliver McGowan) is welcome, but it will not be a panacea because training necessarily needs to be tailored to specific settings e.g., primary care, mental health inpatient, community, and forensic services.

Information - Accessible?

 

If you do not have a learning disability it is hard to imagine the world as a complex map of structures, sounds and directions that you cannot navigate your way around but that is the daily experience of many with a learning disability. Since August 2016 all organisations that provide NHS care and/or publicly funded adult social care are legally required to follow the Accessible Information Standard. The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing, and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment, or sensory loss. Yet for so many with a learning disability, information that is truly accessible is in sparse supply.

Being able to understand what is happening to, with and for you is very important but frequently this is highly problematic for people with a learning disability given society’s dependence on the written word which results in increasing inequalities. Whatever the age of a person with a learning disability the use of jargon causes significant inequalities in understanding and as a result increases reduced health outcome.

 

The language used by healthcare professionals can further exacerbate the frustrations of parents. Here is how one parent sets it out,

‘There is a tendency for jargon and care speak to erase consideration of people as people and construct them as a social care problem to be dealt with… can also lead to a dismissal of the person.’

Many people with learning disabilities can understand pictures better than words. Pictures can say much more than words and visual learning can unlock a person’s abilities. Books Beyond Words is the UK’s national charity for visual literacy and emotional wellbeing.

 

A picture containing clothing, text, human face, illustration Description automatically generated www.booksbeyondwords.co.uk

www.booksbeyondwords.co.uk

Books Beyond Words are vital in ‘Nurturing visual literacy – our ability to read meaning in images – can unlock everyone’s ability to connect with their feelings and improve their mental health and wellbeing. When we build our mental wealth, we all thrive.’

‘Books Beyond Words …stories explore feelings and relationships in everyday, as well as out of the ordinary situations. They tell of neighbourliness and belonging; of loneliness, friendship, and love; and of different ways to cope with traumatic events in our lives. They explore the things that get us out of bed in the morning: hobbies, sport, work, volunteering, and adventure. They introduce us to fewer familiar topics involving healthcare and criminal justice.’

Building Books Beyond Words materials: ‘Each story is co-created with and for people who find pictures easier to understand than words. This includes people with learning disabilities and/or autism, people with cognitive or communication difficulties, such as Dementia, people who have difficulty with reading, including some Deaf people, and people who do not use the language of the country where they are living.’ Quotation taken from www.booksbeyondwords.co.uk

Books Beyond Words ‘stories are used in health care settings, schools and colleges, libraries, supported living settings, therapeutic services, and community organisations, amongst others.’ Quotation taken from www.booksbeyondwords.co.uk

In my clinical practice I have used Books Beyond Words extensively to aid a person’s understanding about what is happening to them across community, acute, paediatric, and forensic service settings. These materials also enable clinicians to ascertain a person’s ability to consent to or otherwise for treatments as well as being used to build personalised care plans. They open a world of learning all too often shut off for people with learning disabilities.

Families and people with learning disabilities frequently highlight to me that it is very hard to get accessible information even though this is a legal obligation. The power of visual literacy is not as frequently employed across all settings to enhance understanding, engagement and reducing health inequalities.


Individuals without speech

The struggles faced by individuals (and their parents) who do not employ verbal language as a way of communicating compound the difficulties in accessing health care. A parent of a young man with no verbal language and a severe learning disability shared this with me,

 

‘Fascinating challenge with people with no speech where I have to be J’s spokesman and try to coordinate multiple medical issues: e.g., dentistry and the neurologists and wanting blood tests: he can only give blood under a GA, which would be brilliant for dentistry too.’

 

Policies
Past policies specifically focused on people with learning disabilities and their families, but many people feel this is no longer the case. Valuing people (2001) and Valuing People (2007) are the last White Papers to be developed specifically to meet the requirements of people with a learning disability.

As a person with learning disabilities put it to me recently,’ We used to have proper strategies for people with learning disabilities like Valuing People, we used to have a proper government funded (health) observatory that would mean we could go and find out information and proper resources. Its all gone.’

Another person with a learning disability said, ‘You see the way learning disability health policy has fallen when people had to battle to be a priority for the Covid vaccine despite being 30 x more likely to die of Covid....people feel they are truly bottom of the pile.’ Covid really did highlight the health inequalities experienced by people with a learning disability. There is a need for a significant shift in the balance of power.

Balance of Power Shift – Quality Improvement Panel – 3 Co-National Directors for learning disabilities

‘There is nothing that feels like it is driven with a long-term view.’ Said a person with a learning disability to me recently. This needs to change for inequalities in health and in other settings to be addressed. This can be achieved by the formation of a new panel which gives a voice and real power to those with learning disabilities. The panel would be ideally made up of 51% people with a learning disability, 34% family members of those with a learning disability and 15% professionals.

For a balance in power shift and to make a reality of experts by experience at the heart of change there needs to a different approach taken in relation national directors. The creation of three co-national directors for learning disabilities as set out below would do this:

  1. An individual with learning disabilities
  2. An individual with parental or family experiences
  3. An individual from a professional background

These co-national directors would be with the panel leading on the delivery of the improvements to be achieved.

Such a panel necessarily needs to have real responsibility and accountability to deliver care evolution, health improvements and ensure quality of support. The core focus would be on planning and developing health and care systems, training of staff, monitoring of outcomes and focusing on improving quality and ensuring health and well-being. Currently, such panels are dominated by professional voices with few people with any lived experience of learning disability. This means it takes a lot longer to work out what is going wrong and why. A shift in the balance of power is required and a panel as set out would assist in addressing health inequalities and improve lives.

 

Conclusion

The key ways of addressing the health inequalities experienced by people with a learning disability are to:

It is vital to ACT

•          Assess what is happening to and for the person.

•          Consider what is behind what is happening – is there a health problem?

•          Take action DON’T DELAY get a person’s health checked out.

 

One family member sums up the feeling that is very representative of people with learning disabilities and family members in relation to improving the health and well-being of people with a learning disability when saying,

 

‘Let's get this done and stop talking about it. There are human rights abuses taking place daily to the most vulnerable in our society on our watch. It must stop.’

 

A family member stressed the need for this Committee and others to create the following in an action focused manner in relation to the challenges set out above and given in oral evidence by all who attended the Committee on 26.4.23:

1) List of Actions

2) Who owns the delivery of those actions – named bodies and persons 

3) Dates by which EACH of those actions will be delivered with specific SMART targets and dates.

4) What happens if the named owner of those actions does not deliver in the set timeframe.

 

Family representation at a future Committee would be welcomed by family members who have engaged with me as well as people with a learning disability.

 

 

 

 

Correspondence:  jim.blair2@nhs.net

Twitter: @jimgblair

Further Reading

 

 

 

 

July 2023