Hospital life : Getting health care right in hospitals for people with complex health needs and intellectual disability

My son Otito was born with a metabolic condition called Propionic Acidaemia. This condition sadly compromised his body’s ability to breakdown proteins. The implication of this was that he suffered with lots of metabolic decompensations and his body easily built up toxins called Ammonia in his blood.

As a result of this degenerative condition, he was developmentally behind for his age.  His social and communication skills where severely impaired and he mostly existed in a world of his own. As a result, he was subsequently diagnosed with severe autism and learning disabilities. It was a huge shock to me as his mother to accept that my son would be different from other children. I took steps to overcome this feeling by getting as much information as I could once the diagnosis was made.

His consultant at the time was very kind and eager to explain the condition to me. Before long, I understood most of the implications of the condition for my child. I also learnt about ways to spot the early signs of a metabolic crisis. Sadly, detecting the early signs did not prevent the metabolic crises that he characteristically suffered. The rate at which they occurred meant that he became a very unstable child. He became frequently hospitalised to keep him safe. Unfortunately, that also meant that he spent more time in hospital than we all would have hoped.

By his 3rd  year of life, he suffered  a further complication of his condition with chronic pancreatitis and became hospitalised for one year to keep him safe. During his admission, we encountered many Health Care Professionals (HCPs). These were made up of medical staff functioning in different capacities and across various disciplines within the hospital.. While they all had the sole purpose of delivering excellent healthcare to our son, it was hard to get them to understand the care he needed because his level of development impaired his ability to express these needs appropriately.

As his mother, I was also his advocate. I sprang to his defence like a mother hen every time his needs were missed. It was difficult to get the staff to listen. His inability to communicate left him non-verbal. He was also unable to express his emotions appropriately. For example, his expression of pain was not by crying or screaming as characteristically normal for most children. Instead, he became more quiet, withdrawn, less mobile and inactive. This pain response was mainly interpreted as being calm but not in pain. He was also very sensitive to being touched or held. During pain episodes, this touch sensitivity always became worse. His only position of comfort was always one where he could lie curled in a foetal position. He tended to pull in his limbs and stayed in the corner of the bed grinding his teeth.

It was heart breaking to see him suffer at a time when he was closest to care. I cried for him every time he pulled away. I cried for the pain he could not express. I wished more than ever that he could do the same. I could not even communicate that to him. It was a helpless situation to be in as a mother. I could not pick him up to cuddle him or comfort him either as he could not tolerate such interactions as a result of being autistic.

When the pain team got involved, I was a bit hopeful. However, his scores were low on their charts. The pain charts recorded higher scores for pain based on normal responses. For example screaming, being irritable and displaying active movements especially kicking to show pain was ranked highly. Incidentally, the pain endured by most pancreatitis sufferers I had met where always likened to excruciating labour pains experienced during childbirth. It was no wonder that the HCPs only disagreed with me every time I suggested that he was having yet another bout of the pancreatitis pain cycle. They could not justify the need to give the level of pain relief I was requesting since the pain scores they charted did not support my claim

However, given his status as a severely autistic child with learning disabilities it was really not far-fetched. Their lack of experience with this type of autism that could lead to such pain responses in children meant that my son was unintentionally left to suffer. I knew I had to seek help for my son but had no idea how. As time went by my son became very withdrawn. While what the health professionals saw was more of a quiet boy, what I saw was less of my child and more of a chronic patient. To them his quietness was only a confirmation that he was after all unwell. We kept hitting brick walls at every corner trying to get him the help he needed in those first few months when he was admitted.

It was while out on a walk along the hospital corridor one day that I made a discovery that changed the course of my son’s care for the better. After one of my routine arguments about the need to administer more pain relief for my son, I needed a change of scenery. That was when I accidentally stumbled across a leaflet hanging casually from a rack on the wall. It revealed the information about the existence of an expert in the hospital called Jim Blair who specialised in supporting families who had children with learning disabilities (LD). He happened to be a consultant and lead nurse in this area. Surprisingly and in the most unceremonious fashion, help finally arrived when I least expected it!

Jim was very helpful and approachable. I was able to discuss my concerns easily with him. It was relieving to find someone-a health professional who finally understood my son’s plight. He simply got it! The pain responses that I described to him were anything but alien. In fact he said it was quite common with children who had the level of autism that Otito possessed. It was also a relief to know that my son was neither alone nor was his case beyond redemption.

With his help, the team’s attention was drawn to why Otito’s autism status could not be overlooked throughout his care. He also noted why autism had impaired his pain response and quickly introduced a more suitable pain scoring sheet. The new document accommodated my son’s unique responses to pain. Things (like being quiet, curling up in a foetal position, not moving around, staying in corners, grinding his teeth, closing his eyes even while awake, interacting less with people or toys etc)  that were previously being overlooked were not only  taken into account but In fact given higher scores using the new pain score sheet.  It helped the doctors understand my son better. By using this new pain score sheet they could also justify the need for a higher level of pain relief (something that was also an important requirement for dispensing them).

The learning disability nurse also made us aware of something called a “hospital passport”. By the time I had filled out a “hospital passport” for him, it served as a well-documented description of nearly everything pertaining to my son. It was also an introductory piece of document that saved a lot of time by acquainting HCPs with my son’s unique characteristics before an actual interaction. Information derived from it helped the HCP understand not only what to expect from my son as a result of being autistic but also gave them more tools to tailor the care they provided.

I was able to record everything from important information (like my son’s name, date of birth, hospital number , NHS number ,his weight, his height) to seemingly less important information (like his mealtimes, his sleep times, bath times, walk times) and silly information (like his favourite toy- for example his tablet and the need to make sure it always had power, the things that worked- for example giving him his toy stethoscope before carrying out observations, things you must never do- for example administer his medicines without showing him the tray). I was also able to include many of the less important but routine activities that could set him off if not followed to the latter.

As a severely autistic child understanding and applying information about all these activities were sometimes the difference between a good and bad day for Otito. These were the things he understood. They also provided him with stability and kept him feeling safe. Having the “hospital passport” was a relief to me as a parent because not only could I have a copy, I could leave one in his hospital file.

Subsequently, healthcare professionals were able read through this hospital passport before interacting with my son. It gave them a head start about what to expect and informed them about things they could do to make a difference to the care they provided him. By understanding this document they were also more able to see how the incidence of severe autism and learning difficulties on a child could challenge their prowess on a condition that they otherwise had the full grasp and understanding of.

In no time, Otito was able to brighten up and stump around the ward when he felt strong enough. I was overjoyed to see more of my boy and less of the curled-up patient. He spent one year in the hospital and I will say that the rest of his admission became easier to manage for all concerned. I was also more able to take breaks from caring for him to enable me rest and spend time with my other child. I had the confidence to do this because the hospital passport meant that anyone could look after him as well as I could by following the information therein. His needs were clearly outlined and specific information about him could be shared and understood in my absence.

More importantly, Otito became more able to warm up to the staff caring for him. He felt less threatened by their incessant but needful intrusions. It could be that began to perceive the staff as being more helpful and not as the enemies. This shift in his attitude would not have been possible if staff had not been made aware of Otito’s needs from an LD point of view.

It is my opinion that our experience was greatly improved because the LD nurse stepped in. I found out about the LD nurse accidentally. Prior to this, I had no idea about the existence of this service. I sincerely wish that I had known sooner because the strategies that helped Otito enjoy better quality of care would have been in place sooner. Considering that he was hospitalised, more could have been done to make us aware as parents about the existence of the LD nursing team. As a family, we were especially at cross purposes with the staff regarding the interpretation of Otito’s pain responses. Since Otito already had a diagnosis of autism, this should have triggered the need to make a referral to the LD nursing service. As a result of this and from a lived experience here are a few recommendations that may be helpful

  • More leaflets introducing LD nurses should be made compulsorily available to parents where the child has autism or LD diagnosis.
  • The “patient passport” should be more advertised so that parents can become more aware of its existence and use. If parents can understand how it can improve the quality of care that the child receives, then they will be more likely to fill it out.
  • HCPs need to listen more so that they can acknowledge parents’ concerns about deviations in the children’s health. Most HCPs tend to brush off concerns especially when they don’t fit the medical pattern without genuinely acting upon them or finding ways to take them into consideration.
  • Where these areas of concerns identified, appropriate referrals to specialists teams should be sought and made. Let the specialist teams decide if they wish to pursue the concerns or not. This gives each patient the chance of accessing specific care that may be tailored to their needs.
  • Staff should be trained so that they can be more able to identify and refer LD cases.

In some cases the existence of LD in children can be easily overlooked by their parents. This is because sometimes parents can be left traumatised by the prospect of adding a new diagnosis to the list of illnesses that their child already suffers from. Many parents do not want to attach this “tag” to their children. It is hard enough for children to live with severe illness. However, these illnesses are made worse for children with impairments in their ability to express the dynamic needs that their severe illnesses impose on their ability to function on a daily basis. Having LD nurses readily available to work with families in the community will help give parents more information that can help reduce these anxieties. In the end children will ultimately become more able to access the right level of care and support through the tools they can provide to their families.

The need for LD nurses across the NHS cannot be over emphasised. Their roles and existence needs more publicity. Whether in the community, hospital or GP settings they need to be available to work more closely with families that have seriously ill children. More information needs to be made available across all the areas where parents are likely to access care for their children. Below are some of the reasons why LD nurse input is so important to children experiencing these learning disabilities.

  • They can help parents understand how to communicate more effectively with their children. This reduces the stress and anxiety experienced by parents about their children where LD concerns are raised.


  • They can help create positive impact on the social spectrum for children living with LDs by helping their needs to be more clearly understood.
  • They help parents embrace the uniqueness that LDs can create in their children and provide them with tools by which the implications of these peculiarities can be expressed.
  • They help reduce the pressures of conformity by providing parents with information to help them adapt to accommodate the needs of their children.
  • They can help HCPs understand ways to identify children who need LD nurse input.
  • They can also help bridge the knowledge gap between health professionals and children with LD by providing strategies that HCPs can employ to help them deliver their care to these groups of patients so that they will have a higher chance of getting the desired outcomes from these interactions.

For us as a family, our son Otito, although beset with many challenges as a patient, enjoyed his hospital admission more as soon as his needs from a learning disability perspective where taken into account. This helped HCPs learn to listen with a view to being more helpful. It made them more able to understand and to be more sympathetic towards him. These were all key to enabling him enjoy what were to be his last days in hospital. He went from being a quiet and very recluse child who only brightened up around his family to becoming more welcoming of the staff.

Gaining this insight meant to him that they too (the staff) became more like us (his family), responding to him and meeting his needs no matter how insignificant. I remember feeling like the nurses stopped doing the necessary medical interventions “to” him and began doing it “with” him. In a way it must have felt better to be acknowledged. They began talking to him even though he could not speak back. They explained things gently before carrying them out. For example they showed him trays containing his medicines even though they did not have to. In return he warmed up to them. He became more able to share his peculiar expressions with the staff more. He smiled more and cooed at times. When they got things right, he even hummed his favourite tunes.

He found his own unique way of communicating with the staff as he did with us- his family. They became less of his enemies and more of his friends in his little mind. He was more welcoming of them in his space and learnt to tolerate the less pleasurable interactions like injections and dressing changes.

Coming down to his level meant that he was happier the patient in their care. He became more able to share more of the beautiful child that he was with us despite his autism and LD challenges. Interacting with him in this way meant that we all became more able to enjoy what were to become our final positive and lasting memories of Otito. It was proof that with the right level of input from LD nurses and the support and willingness of staff to make the necessary changed to suit children with learning disabilities, there can still be positive outcomes for the children and families.