Supporting the Physical Needs of People with Learning Disabilities: Working with Families

A handbook for professionals, support staff and families

by Steve Hardy, Eddie Chaplin and Peter Woodward

Chapter 17: Working Together with Families (reproduced below with permission from Pavilion Publishing)

by Hayley Goleniowska

Book: Supporting the Physical Needs of People with Learning Disabilities

I am very proud to be able to present a chapter I wrote for the above book for medical professionals about the role of families in ensuring quality healthcare for patients with a learning disability. 


I often say that blogging has been a very organic experience for me. Writing about our own feelings and experiences to support others has led over time to speaking to professionals and other writers at conferences, working via email with student obstetricians, being asked to write guest posts for SEN sites and ultimately pen journal articles and chapters in a variety of books. 

Hitherto these have often been books about my experiences of special needs parenting. You can check out Warrior Mums by Michelle Daley (RRP £6.89) and Reasons to Smile by Andrea Knaus and Elizabeth Martins (RRP£12.50) pictured below, and the beautiful Down's Syndrome Diary is currently winging its way around the world. We have the privilege of adding our story to it next. 

Reasons to Smile book

Warrior Mums book

So when I was asked to contribute to a new book for professionals and families called Supporting the Health Needs of People with Learning Disabilities last year, I felt a huge sense of responsibility to get it right for others like our daughter. 

The eagerly-awaited book by Steve Hardy, Eddie Chaplin and Peter Woodward recently launched at the Learning Disability Today event in London, during which copies sold like proverbial hot cakes. I also joined other parent contributors in a talk about our experiences and the vital messages within the book, led by Jim Blair, consultant LDN.

Alongside chapters by well respected professionals in the field, such as Dave Atkinson, Sarah Clayton, Daniel Marsden, Gwen Moulster, Sue Turner and Sally Wilson, on vital topics ranging from how to make reasonable adjustments, coping with diabetes, treating cancer, postural and end of life care, I have put together a section on Working Together with Families which has been reproduced below with permission from the authors and publishers.  

The role of families in healthcare

Chapter 17: Meeting the health needs of people with learning disabilities: working together with families

Introduction

As John Donne stated, ‘No man is an island,’ and likewise a patient with a

learning disability does not exist in isolation.

People with a learning disability are not simply a set of symptoms, a syndrome or

co-morbidities, or the sum total of one particular behaviour pattern; they are one

part of a family network and community, a complex and unique individual. They

have their own likes and dislikes, friendships and relationships, with their own

habits and ways of doing things. Patients with learning disabilities deserve the

very best quality healthcare, delivered with respect and compassion, and one of

the best ways to ensure this is to work closely with those who know them the best.

Carers, family members and support workers are in a privileged position to

know and understand the person fully, and are therefore a medical professional’s

greatest resource; a resource that could prevent vital healthcare issues being

missed or a diagnosis being delayed by making false assumptions about a

person’stypical behaviour (diagnostic overshadowing); a resource that can

pinpoint the reasonable adjustments that must be made to ensure a positive

outcome for the person.

Professionals and families: what are the possible hurdles?

As the mother of a girl who has Down’s syndrome, I understand that families

universally want the best possible care and support for their loved one, who they

understand implicitly. They will have experienced many medical and healthcare

appointments and procedures together, some of which may have been negative

experiences or presented significant challenges.

Essentially, it’s personal, and emotions can easily come to the fore in these

situations. Even a relatively minor procedure can bring back memories of a major

operation and the fear associated with it, for both the patient and those of us

supporting them. It’s even possible for high-profile negative media stories to prey

on families’ minds; phobias can develop and frustrations build.

Families can feel ignored, their concerns brushed aside, or they can feel a lack of

respect for their loved one. Any kind of indication that their family member is not

receiving equal respect and treatment to anyone else is bound to cause upset.

In worst case scenarios, when communication breaks down or when dangerous

assumptions are made, lives can be needlessly lost, as people with a learning

disability are misunderstood, diagnoses are missed or delayed, or essential care

is not delivered in time or at all. The Death by Indifference report (Mencap, 2007)

makes frightening reading for families, and it is up to us all to make sure that no

one with a learning disability dies younger than they should.

It is therefore crucial that teams work together on building one another’s trust,

learning to communicate effectively and listen fully, exploring all possibilities

and making reasonable adjustments in delivery of care that could make

all the difference. Healthcare should not be about two opposing sides with

communication breaking down, but about shared goals and aims.

The mother of the late poet Adam Bojelian, who died following sepsis, is keen to

spread this message.

She aims to educate that:

The NHS is available to all without discrimination.

The NHS has a duty to promote equality and human rights.

The NHS has a duty to diagnose, treat and improve mental and physical health.

Families and carers are at the heart of this, for ‘together we are better.’

(Laverty, 2015)

Clear communication with the person with a learning disability and their family 

What is most important for families when meeting the health needs of someone

with a learning disability? Good communication and respect is what families like

ours consider their main priority. They want to be truly listened to and taken

seriously. Families and carers should be considered as ‘lead professionals’, since

they are experts in the subtle cues that give an accurate picture of their loved

one’s health and play a vital role in ensuring that their healthcare needs are met.

The family are your greatest resource and it is important to value this.

When asked, carers suggested the following ways of making communication

simpler for all:

Create a hospital/health passport – These can be completed at home by the

person with learning disabilities and their family or support workers, and should

be taken to all hospital or clinic appointments. Include information on whether

the individual has communication dif!culties, if they attend a mainstream or

special school or support centre, who their key workers are, and what their likes

and dislikes/fears are. This is also a place to note medication and vital health

data. They can take any format but an example template of a hospital passport

can be downloaded from the University of Bristol (visit http://www.uhbristol.nhs.

uk/patients-and-visitors/information-for-patients/hospital-passport/).

Use Easy Read information – Facts on healthcare should be accessible to

all by being presented with few words, instead making use of pictures and

symbols. These can help explain procedures or teach people how to lead a

healthy lifestyle. The Clear Communication People provide a selection of Easy

Read documents on common tests and hospital procedures and allow families

to prepare for procedures together at home in their own time.

Do not make assumptions but listen to families – Someone with a

learning disability will need support with taking medication, attending

appointments, participating in therapies and so on, so enlist the help of family

members. Do not make assumptions and always check for understanding after

giving explanations. It is also important not to attribute any symptoms to the

person’s learning disability alone. It is crucial to eliminate other conditions by

listening to families when they pinpoint any changes in their loved one’s mood

or behaviour. 

Learn some key Makaton signs – Using sign, symbols or pictures can help

reinforce a message visually and provides a focus for some. It is particularly

valuable when communicating with someone who uses sign as their primary

method of communication. Families will advise on which methods work best

for their loved one.

Communicate with the person with learning disabilities – Although

families play a crucial role in communication, diagnosis and treatment, it is

important that medical professionals talk to the patient directly, not assuming

they need a spokesperson. Find out their needs and ask them how they feel

before turning to those who support them. Simply looking at the person while

talking is enough to make them feel valued. Respect their privacy and ways of

doing things as much as for any other patient.

Actress Sarah Gordy, who has Down’s syndrome, has created a useful video called

Wood for the Trees (Gordy, 2015), in conjunction with the General Medical Council,

outlining the dangers of making assumptions and ignoring vital signs in patients

with learning disabilities. It provides a very good starting point for discussions

on communication between families and medical professionals, and warns of the

dangers when they aren’t listened to. In one moving scene, where doctors finally

grasp the severity of her character’s situation, Sarah says, ‘You weren’t looking.

Iwas here all the time’ (Gordy, 2015).

Motivational public speaker James Hamilton, who also has Down’s syndrome,

speaks to all new employees at his local NHS trust university hospital. He

talks about life with learning disabilities and how difficult it can be when being

admitted to hospital.

‘Doctors and nurses forget that we can’t understand when they use a lot of medical

terminology. Sometimes we need our families to help us settle and may need

them to speak on our behalf, like an advocate. If we are rushed in with no time

to prepare, our hospital uses a hospital passport so we don’t need to be asked

questions when we are least likely to understand and be in a position to reply

calmly. Sometimes we want people to act out what they want without using words.

I think all medical professionals need to think of us as people first and not just as

a person with a learning disability who cannot or will not understand what they

are saying.’

(Hamilton, 2015)

The family’s role in ensuring that the healthcare needs of those with learning disability are met 

In order to build understanding and trust between individuals receiving

care, families and healthcare professionals, it is important to share medical

information with family members as well as the individual who is being treated.

Consider using online access to medical records

Family and carers can also be granted permission to view this information which

is vital to their loved one’s well-being and ensuring they get the right treatment

and support. This cutting-edge system was pioneered by Dr Amir Hannan of the

Houghton Thornley Medical Centres.

Dr Hannan states that, so far, 20% of all his patients with learning disabilities are

signed up to his GP Electronic Health Records:

‘We know that patients and their families who access their records have a better

understanding of their own health and are “ahead of the game”. They know what is

in their records and usually find it easy to see any recent letters, test results or scan

results and what was discussed in previous consultations.’

(Hannan, 2015)

The aim is to see an increase in health literacy for many families/carers and

people with learning disabilities, and to improve a family’s understanding about a

patient and be enabled to cater for their needs and access available services.

It is the professionals who are ultimately required to make decisions on the

healthcare that is in someone’s best interest if they lack capacity, but they are

legally obliged to include the family in reaching this decision.

The family and carers will be aware of any past problems with procedures that

could be avoided with some reasonable adjustments, and may be able to suggest

solutions, for example, keeping a patient away from bright lights or noise, role

playing procedures and visits in advance. So really listening to what they have to

say is vital.

  

Invite families to ensure that regular health screening checks are made

‘The annual health check should do a top to toe “MOT” of a person with learning

disabilities. Enlist the support of family members to make sure this happens

regularly.’

(Blair, 2016)

To get this right, health professionals must engage the person, their family, carers

and supporters as well as community learning disabilities nurses. Only by doing

this will a holistic picture emerge of what the person’s health status is, and how a

plan to address health needs can be formulated.

Encourage families to be organised

Encourage families to be organised and to keep medical information, letters,

appointment details and the hospital/health passport in a file. The will save a lot

of time and stress and help them keep track of healthcare needs.

Finding a solution together: what additional support is available for patients with learningdisabilities and their families? 

Learning disability nurses

These specialist nurses help liaise between the family and surgical teams and

discuss the specific needs of patients. The result is a calmer, smoother and shorter

period of time in hospital. They are worth their weight in gold, so put families in

touch with this specialist team.

I became aware of learning disability nurses when our daughter went into

hospital for a routine operation. The nurse was able to liaise with the anaesthetist

to arrange skipping the pre-med and also advised surgical teams that she should

go to theatre as early as possible on the day to avoid uncomfortable situations

that she would not be able to deal with mentally and emotionally. I thought of her

as a bridge between our family’s concerns and the medical team’s aims. She acted

as a sort of medical translator.

Learning disability nurses play an invaluable role in hospitals. They remove fear

and they make sure procedures and stays in hospital go as smoothly as possible.

They mediate and translate between the families and the consultants, surgeons

and managers, as well as being a vital mouthpiece to communicate the needs of

those with learning disabilities. In the long run they save time and money.

The early days following our daughter’s diagnosis at birth would have been so

much easier with their calm, unbiased support on hand from day one. They are in

a unique position to help break down the medical model of disability and bring us

to a more realistic social model, that each individual is unique. This approach, and

indeed the introduction of learning disability teams at antenatal consultations, is

something that I believe would be beneficial to many new families.

Support groups and online forums

Online communities are becoming more and more popular. They bring together

medical professionals, patients and their families and allow the sharing of

information and advice, as well as a place to talk openly and freely about worries

and concerns or ideas that worked. Try finding a specific group that deals with a

relevant health issue or syndrome in order to connect with others going through

similar experiences.

‘Online communities that focus on a particular disease or condition and can

include patients, carers, clinicians, researchers and industry. These communities

are beginning to change how patients are perceived and how services are delivered.’

(Hodgkin, 2015)

The following online groups and charities provide just this kind of support:

The British Institute of Learning Disabilities: http://www.bild.org.uk

Down’s Syndrome Association: http://www.downs-syndrome.org.uk

Mencap: https://www.mencap.org.uk

Scope: http://www.scope.org.uk

Firefly Garden: http://community.fireflyfriends.com

Special Needs Jungle: http://www.specialneedsjungle.com

Makaton: https://www.makaton.org

Easy Read: http://www.easy-read-online.co.uk/

Supporting the Physical Health Needs of People with Learning Disabilities is available from Pavilion Publishing, priced £28.00

They say:

This informative and practical handbook provides healthcare professionals and support staff working with individuals with a learning disability and their family carers’ information on a range of physical illnesses and health needs to support people with different conditions.

This handbook aims to simplify what can be a complex area in order to meet individual’s healthcare needs.

Within this book issues around accessing healthcare services for individuals with a learning disability are explored in detail and from a number of perspectives, including from people with learning disabilities and their carers who bear the brunt of these inequalities.

Supporting the Physical Health Needs of People with Learning Disabilities touches upon the psychological issues that occur during physical ill health.

This handbook also addresses the different ways that clinical healthcare professionals should adapt their practice to meet the needs of a person with a learning disability.

Why is this handbook important?

It is well known people with learning disabilities face health inequalities and live shorter lives than others in the general population. 

Why this occurs is complex, but what we do know is this group often have difficulties accessing health services or receive treatment from clinicians. Often at their own admission they are lacking awareness not only of how illness may present and the additional risks people with learning disabilities may face.