Through our eyes: what parents want for their children from health professionals

Parents who are all experts by parental experience, talk about their experiences with health professionals, both positive and negative, and what would really help them and their children. Jim Blair provides summaries and suggestions for improvements for these families.

Jim Blair Consultant Nurse Learning (Intellectual) Disabilities, Great Ormond Street Hospital
Mary Busk Expert by Parental Experience
Hayley Goleniowska Expert by Parental Experience
Simon Hawtrey-Woore Expert by Parental Experience
Sue Morris Expert by Parental Experience
Yvonne Newbold Expert by Parental Experience
Stephanie Nimmo Expert by Parental Experience

Introduction

Who knows best? Families of people with learning disabilities, their carers or healthcare professionals? This is a difficult question to answer, but it is certainly true that health professionals as well as those working in social and education settings can only get care and support right when they involve those who have lived experience, namely people with learning disabilities and their families. This chapter focuses on family members, who present here, using their own words and their own names, their feelings about health services and what changes they would like to see. It is essential that all health professionals gain a clear, focused sense of what it is like to experience health services through the eyes of those who use them.

The challenges and difficulties families face when entering the world of hospitals and health service settings are captured in the following piece by Yvonne, a mother of a child with severe and profound learning disabilities and complex health needs.

What I would wish for

Hospitals will always be a part of our family life – it goes with the territory when you have a child with complex needs. Even though I spend several hours, sometimes several days and nights, in hospital every month, I absolutely dread every minute we’re there, and it gets harder with each passing year.
What one thing would make the whole experience more bearable? That’s easy. I wish that every single hospital employee could learn how to truly listen.
Some health professionals barely listen at all. Others appear to listen, but you soon realise that it was only so they could formulate their reply. Occasionally, we meet someone very special who really listens, and with their whole selves, so they even hear what’s left unsaid.
They’re the ones who make magic happen. As well as absorbing our words, they gain a tangible sense of what our lives are really like in a way that parents like me seldom experience. Time stops still while compassionate kindness soothes suffering. In that moment, something profound happens; my sick child becomes the only thing that matters.
You hear and take my concerns seriously, somehow knowing this is my first adult conversation in days. You make me feel like an equal rather than someone less. You understand all I say even though I’m barely talking coherently. You help me make sense of all of my fears. You acknowledge the essence of who my broken, hurting little boy really is, barely noticing his disabilities and equipment. You make a holistic assessment based on quality of life rather than individual symptoms.
When my child doesn’t co-operate with your examination, you ask for and accept my help. I suggest we turn it into a game, you play along enthusiastically.
You offer me a glimpse of the future when all health professionals are like you. When we will all pull together on the same side, working in partnership solely to enhance my child’s life.
I can tell by your eyes that you know the things we haven’t talked about. You recognise my exhaustion and notice how my hair hasn’t seen a comb for a week, but you don’t judge me or make me feel inadequate. You ‘get’ how my life is. A never-ending merry-go-round of sleep-deprivation, of coping with double incontinence, of tube-feeds, of nasal-cannulas, of oxygen-saturation monitors, and of the ever-present vomiting and chest physiotherapy in the middle of the night.
You know how my son’s fragility terrifies me, frightened that his tenuous grip on life could snap at any moment. You feel my guilt that I can’t stop his pain, and you sense how hard I work to keep him alive. You know better than to ask me how I’m coping because you know I’ll always say ‘I’m fine’. You understand that that’s better than me starting to cry and never being able to stop, so we don’t go there. We don’t have to because for that moment, you were already there, with us and for us.
(Yvonne Newbold is the author of The Special Parent’s Handbook, published in 2014.)

This powerful piece clearly sets out the treadmill effect that is often felt by families when accessing healthcare. It also offers solutions, stating that in order to get it right all health professionals need to:

take time to be with the person with a learning disability and their families to understand their lived experiences
pick up not only on what is said, but also what is not said, and avoid hurrying the interaction.

Getting support and care right

Getting support and care right is not easy, and ensuring that health professionals effectively engage and interact with families and those who love and know the child/person with a learning disability is central to making sure the interaction and outcomes are helpful, accurate and appropriate. Hollins and Hollins (2005), both parents of an adult son who has a learning disability, highlight the need, as did Yvonne, to first of all listen to parents and other people who love the child or young person. It is vital to remember that doctors and nurses frequently see and get to know a child for a very small number of minutes or hours in any year. Compare that with the amount of time that family members spend together. Hollins and Hollins ask, who, then, are the experts? It cannot be the health professionals alone. Health professionals must therefore strive to create a strong trusting relationship with families. This requires health professionals to really adopt what Yvonne referred to earlier.

Sometimes families are considered difficult. A so-called ‘difficult’ family is one who doesn’t yet trust health professionals, perhaps because they have had bad experiences with health professionals in the past.

More than a diagnosis

Another element that should be central for health professionals is to always be mindful that there is more to the child or young person than their medical diagnosis. Human development involves emotional adjustments for every child and every parent, whether a child is disabled or not. Every individual responds, reacts and interacts in a unique way to difference. Health professionals will be able to help with these adjustments by respecting and supporting the person with a learning disability and families to face any difficulties they are experiencing (Hollins & Hollins, 2005). They should make efforts to about find out about the person; who they are, what they like, what they can do and how they contribute to family and social life.

Learning to listen

Words such as ‘respect’ and ‘empower’ give some sense of what should be central to the relationship between healthcare professionals, people with learning disabilities and their families. One part of empowering people is to equip them with the tools to understand what is happening to them in ‘this place, at this time, with these caregivers’. This might include information but, even more importantly, it includes helping them to share their hopes and their fears in whatever way they can. The Books Beyond Words series tell stories about many health and social care experiences and can be a powerful way of restoring confidence and hope for people who find pictures easier to understand than words.

In the beginning, the fight

At the start of life with a child with a learning disability it can feel like your life is no longer your own. Stephanie illustrates this clearly and explores a way through it here.

In the early days I fought against the system, I fought against the fact that suddenly your life was not your own, that even 18-year-old student nurses could sit and read notes about your child that you were not allowed to look at. Lives on view for all to see, every emotion, every outburst.
The first lesson I learnt was that when your child is really complicated and has a really rare condition then medicine becomes no more than educated guesswork. The doctors don’t have all the answers, the ones you respect are the ones who will admit that they don’t know what to do and will work with you to find out.
The internet becomes your best friend and your enemy. You spend hours trawling through case studies, trying to find the answer that will help your child. Believe me, as time goes by you don’t go to the internet anymore. It does not have all the answers; your child is unique and while the internet will give you pointers there are no guarantees that treatments that work for others will work for your child.
You do not have to be alone. It took me a long time to realise that. And by talking and opening up to other parents who have walked your path you can gain the benefit of their experience, what they did that worked, what they wished they had done.
I have learned time and time again that it is important to have a good relationship with the doctors treating your child. You don’t have to like them, but you have to work with them. I have learned over the years that doctors really do care, even the ones that appear not to, some of them don’t have the best bedside manner; some are very arrogant. Yes, they can go home and switch off, but they all have your child’s best interests at heart and sometimes their views will clash with yours.
This is why taking another person along to meetings, involving a support group, an intermediary, the PALs [patient advice and liaison] service is so important, because at the time in your life when you are dealing with the most extreme of emotions and are so terrified that you may lose your child, you also have to be calm, rational and efficient.
(Stephanie Nimmo)

Open partnerships

Sue, whose son, Darrell, is 18 years old with a great sense of humour, Down’s syndrome, severe learning disabilities, physical disability, and a variety of complex health and behavioural issues, suggests that parents and health professionals should work in open partnership:

As a parent, I would like to see health professionals who see their role as a joint partnership with the parent/carer, to be open when a parent suggests what they think is wrong with their child and looking into those concerns. All people are different and react differently, so do people with learning disability, which is why we need staff in our NHS who can adapt to all our children: one may need space and another may need a lot of interaction. Understand we may have already had the biggest struggle just getting to the appointment, so go easy on us. I have already witnessed over the years how a little banter goes a long way and welcome this with open arms – sometimes we need to laugh to escape the harsh reality.
(Sue Morris)

The need for confident parenting and confident staff

Many parents feel the key to good care and health outcomes is for them and staff to be confident. This is clearly set out in the following piece by Simon.

Scarlett is now approaching her 11th birthday, and over those 11 years we have clocked up a whole range of experiences and emotions with the National Health Service. Human nature means that all the early trauma of a premature birth and emerging reality of our darling daughter having global development delay, a hole in her heart and hypothyroidism have faded, and we are able to, for the most part, stay in the present and not think too far ahead or reflect on the past. She’s a very happy, confident little girl who loves people and we feel very blessed.
From our early experience of the medical world trying to support Scarlett, we realised the importance we as parents play in ensuring the quality of care she gets. We have found that we need to be on the front foot and asking the questions and making reasonable requests to ensure the often traumatic experience of hospital treatments goes as well as possible.
Confident parenting and confident staff can make a huge difference to the experience. Where we see the best experience is where Scarlett and I are known and staff communicate well in terms of what adjustments can be made, waiting time expectations and positively engaging with Scarlett rather than through me – taking the time to connect with Scarlett as an anxious little girl rather than as just the next patient. At times I have wondered if they even noticed her or her wheelchair. Eye contact even with me isn’t guaranteed at ‘check in’.
Our experiences have been very mixed and there has been very little if any ‘flagging’ [alerts denoting a person has a learning disability placed on the medical records of the person so that adjustments can be made] to date, which I feel would make a huge difference to us.
We’ve had to wait three hours in A&E when Scarlett can’t sit still for two minutes; I’ve had my head x-rayed trying to hold Scarlett’s leg still as she freaked out in a cold, dark room; we’ve had a nurse try to get her to read the board in an eye test when she can’t speak or understand the task; and we’ve waited 90 minutes before the staff realised that her notes were still at the main reception. This was despite my regular request for an update.
But then we’ve had amazing experiences at hospital when she has her bloods taken – a procedure that could be hugely traumatic, but the nurses are amazing with Scarlett. Once we get into the system and are with consultants and nursing staff who are self-confident and take time to connect with Scarlett, things are 100 times better for all concerned.
One area the majority of clinical staff we have experienced seem to find it hard to relate to, no matter how experienced, is what it’s like journeying through life with a child with physical and learning disabilities. It’s exhausting. It challenges all relationships in the family unit. It’s relentless. It can feel claustrophobic and it can feel very lonely as the rest of the world gets on regardless. Medical appointments often bring all these emotions together. Even after 11 years I still dread them and try my upmost for Scarlett not to pick up on this.
(Simon Hawtrey-Woore)

What needs to change?

Simon has also identified what change is needed:

‘More regular training to build confidence in, and improve awareness of learning disabilities – if in doubt ask, don’t judge.
More opportunities for those with learning disabilities to work in the organisation.
More training around effective communication with patients and parents with learning disabilities.
Allow more time in the process/system at key moments in the patient pathway – taking time to connect, build trust and work out the best way to communicate is key to successful experiences.
Ask how best to communicate and check in at regular intervals to maintain the connection/trust.
Flag the person’s disability and individual needs ahead of time, all the time, and communicating the difference it makes to parents and patients – it is not just another process or form; it really does make a difference!
Think about the context/background of the individual, rather than just seeing the person as the next name on the list – for most patients and parents simply travelling to and from the hospital or GP surgery is a big ordeal.
Support parents with what questions to ask and what to look for/expect – never assume that because some guide has been issued it has reached the parents or patients, is in the right format or has been read.

And finally …

Encourage parent responsibility and support of the clinical staff to help them make connections and communicate effectively with the patient. Emotions run high but a quality care experience is a ‘partnership’ between staff, parent and patient – it’s not an entitlement.’

When health professionals get it right

Health professionals, as Simon and other parents have outlined, can get it right.

The following is Hayley’s experience of being in hospital and the care and support provided by a learning disability nurse. This example illustrates what happens when health professionals get care right.

Our youngest daughter, Natty, is eight and has Down’s syndrome, and it was only through a chance meeting at a conference that I met and learned about the role of learning disability nurses. I immediately made the false assumption that these professionals were on standby to help adults in need of support, and it was only when our daughter was admitted for a routine tonsil and adenoid operation some months later, that I began to wonder if they might be able to help younger patients and their families too.
The team were only too pleased to help and I received a call at home to talk me through my concerns ahead of our daughter’s surgery. I was able to explain my worries about the little patient’s phobia of needles and numbing creams, and her lack of understanding about why she might have to wait long periods of time without eating on the day of her operation. The nurse was able to liaise with the anaesthetist to arrange skipping the pre-med and also advised surgical teams that our daughter 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.
Not only were these practical matters addressed with ease, but I found someone who understood my fears and worries as a mum, who realised that even minor surgery conjures up memories of more serious surgery in the past, and that however many times our little ones battle on, it doesn’t get any easier for parents. Even my emotional tears on the phone were accepted and eased. My fears were taken seriously and eased considerably, just by having someone with the right experience to lean on. A member of the team made sure to visit us while the surgery was taking place too and we chatted that awful time away.
Learning disability nurses play an invaluable role in hospitals. They remove fear and they make sure procedures and stays go as smoothly as possible. They 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.
(Hayley Goleniowska is the founder of Down Side Up and has authored many publications, including Fink Cards, which are discussed later)

Usual rules don’t apply

Mary and her husband have three children, one of whom has severe learning disability, autism, behaviours that challenge, mobility difficulties and other health needs. Mary sets out why usual rules do not apply and that health professionals necessarily have to think differently when working with people with learning disabilities.

Our disabled son, Alex, does not look disabled at first glance, but although he is now 15 years old, developmentally he is three, and his language and communication younger than that. He also weighs 15 stone and is nearly 5 feet 5 inches tall.
Health professionals need to understand children and young people like our son better, and what high quality integrated services should look like for them. Normal rules about diet, expectations of co-operation and so on do not apply. Their needs as a whole person have to be at the centre of planning and understanding. This has to include how they can access health services, including the need for a highly preventative approach, given the range of physical and other health challenges they face and will face in the future, including from obesity.
We first came to the children’s hospital many years ago to seek help from the feeding team because a combination of health issues and autism meant Alex had developed extreme problems eating that were affecting him and our family greatly. The team were very understanding and supportive, and have worked with us to support Alex to widen his range of foods and support weight management. We feel very supported as a family because they care for all the family and they understand Alex very well.
We have recently met the learning disability nurse lead, to resolve practical problems about Alex getting a blood test. As he has got older, bigger and stronger, we are struggling more than ever to get support and understanding in local services for these basic needs. We do not have these problems for our other two nondisabled children. Working with the children’s hospital has helped our family, as there is immediate understanding of the issues; we do not have to beg for help or explain Alex’s needs because they are understood. This has helped us to have less stress and worry, and we can feel more confident about ensuring that basic health needs for Alex are addressed now and in the future.
(Mary Busk)

Being confident and being less stressed are core central components of life for everyone, but for parents of a child with a learning disability, it can be very hard. Parents can help each other and can also guide health professionals as to how they too can have a positive impact when talking to new parents, such as those of children with Down’s syndrome.

Talking about Down’s syndrome: conversations for new parents

Fink Cards, cards that can be used to assist understanding and generate discussion, created by Hayley Goleniowska (2015) are a powerful way to initiate conversations that may be difficult to start. ‘Congratulations on the birth of your new baby,’ is the emphatic welcome message from Hayley to other parents of newly diagnosed babies with Down’s syndrome. Sadly all too often these are not the words that health professionals utter when giving news to parents that their child has Down’s syndrome. The reality is that it is only an extra chromosome, so keep calm and carry on; yet society still conjures up visions of a future with little or no hope, worth or purpose for those individuals with Down syndrome. How very wrong this is.

How health professionals give news is vital, and all too often the news that a baby has Down’s syndrome is not given in a positive, supportive, fact-based, humanitarian and focused manner. This is why the more that health professionals know about Down’s syndrome the better. But it is also why a learning disability nurse, as numerous parents advocate, must be more involved in delivering this news since they are best placed to give a fuller, reality-based account of what Down’s syndrome means as a child grows up and evolves into an adult than other professionals who are not solely qualified to work with people with learning disabilities.

Having Down’s syndrome does not define who Hayley’s daughter Natty is; just in the same way that not having Down’s syndrome does not define her other daughter, Mia. Bob’s (Hayley’s husband and the father of both children) matter of fact approach that all would be fine is not what is usually experienced or expressed by other parents.

These cards – along with the excellent website www.downssideup.com set up by Hayley to enable new parents to see that life will go on – provides vital tips, stories, inspiration and love from her family to others. The cards are separated out into sections:

Conversations for new parents – containing tips about how to use the cards, their purpose and very personal supportive messages from Hayley from her own lived experiences.
Your baby – offers questions for parents to consider, such as, ‘Can you describe your baby in three words?’ ‘Does Down’s syndrome define your baby?’ And, ‘Have you kept your baby’s first outfit?’ These questions, along with others, can be extremely helpful for new parents to make sense of the world they have entered, which is, for many, not the one they once contemplated. They could also enable health and social care professionals to gain a small insight into what is helpful support for parents of babies with Down’s syndrome, since it was created by a parent for other parents.
Diagnosis and health – with questions such as, ‘Do other members of the family feel the same as you about your baby’s diagnosis?’ And, ‘What were your first thoughts when you were told your baby has Down’s syndrome?’ These cards get to the point quickly and in a focused manner.
Support – asks questions such as, ‘Who do you talk to about your fears and worries?’ And ‘Have you been told about any support groups?’ These illustrate how essential it is for new parents as well as health professionals to consider why sharing and support are so pivotal to the early (as well as all) stages of having a child with Down’s syndrome.
Life and relationships – asks, ‘Have you discovered any new friends since your baby was born?’ ‘Do people sometimes say things that hurt your feelings?’ And, ‘How has your relationship with your partner changed since the birth of your baby?’ These and other such searching questions get straight to the core of the issues facing new parents and these cards provide a thought-provoking but neutral way of creating a space for individual and familial thoughts.

The Fink Cards are an extremely refreshing way for professionals to ensure that they get it right when meeting with and interacting with parents who have a child with Down’s syndrome. These cards acknowledge that each parent and family member will feel differently when they hear the diagnosis of Down’s syndrome for the first time.

The cards would be very useful for health professionals during their training to assist them in enabling attitudinal change and positive practices to flourish that cherish each child, young person and adult. Books Beyond Words can also be very helpful, especially when preparing a person with a learning disability to go into hospital.

Preparing someone with a learning disability to go into hospital

Preparing people with learning disabilities and their families, carers and supporters to go to hospital is not easy, but there is a useful guide available on the NHS Choices website (see the Useful resources and websites section at the end of the chapter). The Books Beyond Words publication Going into Hospital (Hollins et al, 2015) also includes two stories of people with a learning disability going into hospital and their experiences of what happens. The stories are told through pictures, to enable people with a learning disability, who may read through pictures rather than words, to develop – with the help of a person who knows them well – their understanding of what is likely to happen in hospital. At the back of the book there are tips and guides to getting the right care in hospital, which will prove helpful to people with a learning disability as well as those supporting them. The Beyond Words website also provides a wealth of information about a variety of health issues in an accessible format (see www.booksbeyondwords.co.uk ). These materials can assist in getting things right for people with a learning disability.

How healthcare and support workers can get things right for people with a learning disability accessing healthcare:

Beware of missing serious illness – don’t ignore medical symptoms by assuming they are part of the person’s disability. Act quickly!
Find the best way to communicate – with the person, their families, carers, friends. Not everyone speaks, so use photos, signs, symbols, accessible publications such as the Books Beyond Words series, and pictures alongside speech.
The person, their family and carers are experts – they can help interpret signs and behaviours that may show distress or pain.
Read and act on the hospital or health passport – these provide vital information about a person’s needs.
Assessing someone’s capacity to consent to treatment is dependent on time, decision and topic.
Make reasonable adjustments – for example, by finding someone a quieter place to wait and to be seen in, or by minimising waiting times

(Blair, 2013)

In order to ensure care is adjusted to meet a person with learning disabilities specific needs a TEACH approach, first developed in Hertfordshire by the Community Learning Disability Team, is required:

Time – take time to work with the person.
Environment – alter the environment to meet the person’s needs, for example, by providing quieter areas, reducing lighting and minimising waiting times.
Attitude – have a positive, solutions-orientated focus.
Communication – find out the best way to communicate with the person and their family, carers and supporters, and also communicate this to colleagues.
Help – consider what help the person and their family, carers and supporters need, and how can you meet these needs.

Conclusion

We can never know what it is like to see through another person’s eyes completely, but health professionals must seek to gain a clear picture of how it is for people with a learning disability, their families, carers and supporters. The most effective change and help is often created by those with lived experience. Too frequently health and social care professionals choose not to appreciate what a wealth of knowledge, understanding and expertise parents have. It is only through really engaging parents, families and people with learning disabilities in the education of health and social care professionals, service planning, design and evaluation will we truly experience services that are effective, responsive, well-led, safe and caring.

Summary points

Every person is an individual and unique. Each interaction and contact has to count. Health professionals do need to think differently and act creatively together with the person with a learning disability and their families. In order to get care right, health professionals need to:

Dedicate time to being with the person with a learning disability and their families to tune into their lived experiences.
Take a whole person approach, not just looking at the diagnosis.
Tap into how the person with a learning disability communicates, interacts and usually is.
Listen to parents and other people who love the child, young person or adult.
Invest time and energy, not just for the moment but for the future as well.
Pick up on what is and is not said and avoid hurrying the interaction.

References

Blair J (2013) Everybody’s life has worth: getting it right in hospital for people with an intellectual disability and reducing clinical risks. Clinical Risk 19 58–63.
Goleniowska H (2015) Talking about Down’s Syndrome: Conversations for new parents by Fink Cards.
Hollins S & Hollins M (2005) You and your child: making sense of learning disabilities. London: Karnac Books.
Hollins S, Avis A, Cheverton S & Blair J (2015) Going into Hospital. London: Books Beyond Words.
Newbold Y (2014) The Special Parent’s Handbook. Poole: Amity Books by CMP (UK).

Useful websites and resources

British Institute of Learning Disabilities (BILD) www.bild.org.uk - The institute helps develop the organisations that provide services, and the people who give support.
Books Beyond Words www.booksbeyondwords.co.uk - Publishes accessible stories in pictures to help people with learning and communication disabilities explore and understand their own experiences.
Disability Matters www.disabilitymatters.org.uk - An e-learning resource to enhance understanding and skills of staff.
Down’s Side Up www.downsideup.com - Gently changing perceptions of Down’s Syndrome.
Easyhealth www.easyhealth.org.uk - Provides over 250 free accessible leaflets, health guides and videos.
Mencap A group of organisations working towards better healthcare, well-being and quality of life for people with a learning disability.
NHS Choices, Going into Hospital with a Learning Disability - Information on preparing a person with a learning disability for hospital.
University of Hertfordshire Intellectual Disability and Health - Understanding learning disability and health