Who is Josie? What did she do? How did she help?

Josie is a two-year-old Labrador who helps Sam, aged nine with muscular dystrophy, lead a much more independent life. Josie is trained to alert Sam’s parents if he gets sick in the night, she helps Sam putting on his splints, tidying his room and has helped ease the frustration of not being able to play outside like a usual nine-year-old.

I read about Sam and Josie’s relationship in an article in the Telegraph Newspaper in December the article highlighting one of their chosen charities for 2011: Dogs for the Disabled. The foundations for the charity are simple: Many people find that their dog brings huge emotional and physical benefits, improving their fitness, relieving stress and helping as a social icebreaker. (2) . For disabled people these affects can be much greater. The dogs are trained not only to deal with the practical problems and the physical effects of the disability but also to become a source of freedom, independence and confidence.

Many other charities train dogs to focus on adult partnerships but since 2004, Dogs for the Disabled have been training dogs to help physically disabled children, and two years ago the charity extended its work to include children with autism. The Autism Dogs Service provides families of autism sufferers with a fully trained assistance dog and the PAWS scheme helps train family dogs to improve family life. The programme has been incredibly successful and the charity cannot keep up with demand: 30 dogs are trained at any one time and to date 450 dog/human partnerships have been created. (1)

This new branch of the charity’s work led me to discover a blog called Everything begins with A by Kristina Hughes who was despairing about her autistic son until the arrival of Claude; a black Labrador who was trained on Dogs for the Disableds scheme PAWS, to help Jude (her son) with day to day life.

As medical students, we are likely to be taught that autism is a lifelong disease caused by abnormalities in brain development, that it is part of the autism spectrum, that autism has a genetic predisposition, and that it may also have prenatal risk factors, also it will lead to impairments in social interaction. However, the main problems arising with autism are those which affect levels other than that of tissues and cells. People with autism have said that the world, to them, is a mass of people, places and events which they struggle to make sense of, and which can cause them considerable anxiety.(3) The barriers presented by autism to family and social life are the main problems and clearly show that illness can affect different domains within a system. For a child with autism life can be very confusing, their outlook on life is just a blur of images and sounds, and although it affects every individual differently, one thing remains the same in each case: normal life stops for the whole family.

The idea that illness doesn’t only affect the individual, but others in that persons system is portrayed in Kristina’s blog of life living with a child with autism.

It graphically describes how the behavioural problems associated with autism threatened to overcome her family, simple day-to-day tasks became a huge challenge: Some days I’m small and f**king angry and fed up with nothing being simple, with having to trouble shoot every little trip to the bloody toilet and every single time we need to walk the 50 metres out of our gate to get a pint of sodding milk. (4)

Jude’s tantrums were nothing like any other five-year-old’s and anxiety was brought on by the presence of strangers and minor changes to routine. Autistic children have a constant need for control and have the idea that every aspect of their life is lacking in control, the tug of war of control between Jude and Kristina was proving too difficult to bear. Kristina’s marriage to David also came under enormous pressure due to the strain of providing 24-hour care for a child who finds it difficult to relate to the normal world. Jude’s condition inevitably led to him receiving most of his parent’s attention and this led to bickering and fighting with his brother, Gabriel. This was a form of a positive feedback loop; the more the two fought, the worse Jude’s behavioural problems would get, and therefore the more attention he would receive from his parents and medical professionals. The same mechanism is evoked in the distressed reaction of his parents which isn’t always the right reaction when dealing with children with autism, who find it difficult to understand facial expressions.

Claude came into the family’s life when Kristina was searching for help in trying to ease her and her family’s distressed lifestyle. She discovered the book A friend like Henry by Nuala Gardner; a story about how getting a dog helped the life of a family wrestling with their sons severe autism. After spending a couple of weeks introducing the idea of a puppy to Jude the Hughes’s picked up Claude; And that…. gulp…tear (still gets me)was the first day that J ever spoke to anyone directly. “Hello Claude. You are a dog.(4)

Claude helped tackle the day-to-day tasks that had proved to be a burden on family life. Claude demonstrated to Jude how to try new food-types, helped with potty-training, and by using a double lead (picture) Jude learnt how to walk to school alongside his mum. Training provided by the PAWS scheme also showed Claude how to intervene during one of Jude’s panic attacks; Claude learnt to tap Jude on the nose to stop his tantrums for a few seconds so that Kristina could intervene.

However from the blog it is clear that it is not just Jude’s quality of life that Claude had improved. What we really wanted was something to take the prime focus of our lives off J’s autism and to help us to be us again – G needed a canine friend just as much as J and, actually, so did we! (4), Claude would frequently intervene when the boys began to bicker and he learnt to cuddle Gabriel while his mum got Jude through the morning routine. The focus of the family shifted from focusing on autism to focusing on being a family again. The repercussions of having Claude were felt by all levels of the system surrounding Jude. Claude provided confidence and a form of respite to Kristina and consequently her health and her marriage improved.

The biggest role Claude plays is in providing an extremely strong unconditional relationship with Jude. Most people have many relationships: with friends, teachers, colleagues and family, but Jude’s network is much smaller and always will be as he lacks an understanding of human relationships. But Kristina feels he will always be happiest surrounded by a few trusted individuals: Claude being included as one of them. This proves that effective relationships, although not always human to human relationship, are vital for maintaining good health.

Kristina says in her blog I couldn’t imagine a better cure for our family: the key word being family. This family is a system, with feedback loops, purposiveness (leading a normal family life) and resilience, and Claude, as an intervention, has effectively helped all levels of this system.

One of the elements that stood out to me in Everything starts with A was one of the blogs about labelling. Labels are all around us, we use them daily to pigeonhole people into categories, at school there were always the sporty ones, the ginger one, the pretty girls, the nerds. These labels are just used to highlight differences between people. Jude has ASD (autistic spectrum disorder), and as he grows up the differences between him and his classmates will increase. However these differences are not visible, simply behavioural, which is a worry to Kristina: It just annoys me that people still sometimes say to me That child needs a good slap when he has a tantrum. There is still a lot of ignorance about autism.(5) It can be hard to create awareness about disabilities when people with the condition do not look disabled and, as seen with Kristina, parents of children with autism often say others simply think their child is naughty.

This blog instantly reminded me of an interesting lecture, on the subject of disability, we had in November as part of our Society Health and Medicine course. Each SHM lecture had a guest speaker and I was shocked when Lindsey Brown (the lecturer) said she was the disabled guest speaker. I felt guilty that I had fallen into the common misconception that all disabled people had a physical disability. During the lecture Lindsey introduced us to her assistance dog, Wilf, and she discussed the affect of having him on her day-to-day life.

I wanted to look deeper into the effect Wilf had on Lindsey’s daily life with disability; did he make it easier to explain her disability, like with Kristina and Jude? Or did it make her disability more of social problem; society often misinterprets disabilities which leads to prejudice and discrimination? I also wanted to ask Lindsey about the effect Wilf had on others around her and how they adapted to having him in her life. I was extremely grateful when Lindsey agreed to an interview and we were able to discuss these topics further.

Lindsey was diagnosed with epilepsy at 18, and it was 5 years later that Wilf came into her life. The initial purpose of Wilf was to respond when she had a fit and to look for help, but he was then trained to respond before she had a fit. Initially this was a lot scarier as there was nothing she could do about it, she described it like waiting to be hit by a train. Her GP recognised the need to think of alternative methods of managing her illness and realised being aware the fit was coming and not being able to stop it only introduced a form of positive feedback.

She developed a routine where she used an injection when Wilf warned her of seizures and for years didn’t have a fit.

She describes epilepsy like dropping a rock in a puddle. The rock is epilepsy, the first ripple is the effect on her personally (physically and emotionally), the second ripple is the effect on others close to her, (her friends and family). It became clear that the system surrounding her changed dramatically with Wilf and later in her life when Wilf retired.

Physically Wilf helped stop the seizures, as long as she carried her drugs with her, she would be able to prevent them. The personal impact Wilf had on her was of a constant reassurance that she was healthy: only now can I appreciate all those times he would sit here quietly, because it meant I was okay. Wilf took away her fear which I can imagine being a huge part of accepting living with epilepsy.

Others felt the benefits of Wilf; they had less responsibility and were less likely to have to cope with the physical and emotional effects of the seizures.

Lindsay described Wilf as bringing space to the system; she had more independency and less worry workload.

The system clearly shifted when Lindsay made the decision to let Wilf retire. She admitted that for a while before she made her decision her pace of life had been quickening while Wilf’s was slowing down and she felt it was unfair to keep depending on him so much.

In the workplace, the focus shifted to having epilepsy rather than living with Wilf; which raised questions of her safety in the workplace and questioned the systems resilience. I asked what her friends and family said about her decision to live without her companion, she said they were initially shocked and tried to persuade her to get another dog as this would make them feel safer and reassured.

One idea used in our interview was that the ripples had moved closer to the centre; Lindsay described feeling more pressure from others asking how she was feeling and making sure she was okay. This only enhanced the feeling of guilt at making others close to her worry and made it difficult to communicate her fears.

It was clear during the meeting that she had an effective relationship with the epilepsy nurse in the hospital, and that the nurse played a vital role in providing her with the emotional support needed to maintain good health.

Systems exist on different scales and the most dramatic change in my opinion was society’s perspective on Lindsay’s condition; ie the perspective of a very large group which is affected by a small change. As with autism, epilepsy is a disability that isn’t usually shown in physical characteristics and these types of illness are often overlooked when raising awareness about disabilities. Having Wilf instantly shifted her epilepsy to being visible and her illness became a more recognised condition to others, epilepsy became much more of a social problem to Lindsey. People would continually ask why she had Wilf, she lost some friends who couldn’t cope with being in social situations with so much attention and she admitted she never really found a good answer when people enquired. I can imagine having to disclose such personal information to strangers being frustrating and degrading; at one point Lindsey admitted to thinking about handing out FAQ leaflets when people asked, or when people asked Who does he support? to respond sarcastically Man United!

Stigma is one of the six main sociological themes used when discussing disability (6) and Lindsey talked about having lost her privacy and her master status when she had to answer strangers questions; instantly people would see the diagnosis and not the individual person. After talking to Lindsey I will always appreciate the importance of patient-centred care; treating people as individuals rather than their disability status. The more I spoke to her, the more I understood what she meant when she said, I am not epileptic, and I do not suffer from epilepsy, I HAVE epilepsy. Her disability is a difference and not a label; the person should always come before the disability. The difference in people’s behaviours when she had Wilf and after he retired proves that society has misconceptions regarding disability.

Through this project I have learnt that health conditions have social implications and that these implications may affect the patient’s health and others around them. This is hugely important in practice as, I feel, being able to treat the whole person and not just the physical symptoms is a key element to being a good doctor.

With increasingly shorter consultation times it is becoming even more difficult to find out the hidden parts in the patient’s story that may be affecting their illness. I have begun to understand that as a doctor, you need to take the time to listen to the patient’s story in order to find the true cause of the problem and make the best choice of treatment. This was demonstrated by Lindsey’s first GP who considered her anxieties when she first had Wilf and was completely open to new treatment options.

I was surprised at how well the systems theory approach could be applied to clinical cases and thought that Kristina’s story demonstrated perfectly the effect of illness and interventions on other aspects of the patient’s life. It became clear that Claude was not only improving Jude’s autism; he was a creating a good, balanced family life and therefore essential in maintaining good health. The concepts of gaining and maintaining good health is not only important in our future as doctors dealing with patients, but also to us as medical students as we pass through medical school and in our subsequent medical careers.

Full consent was gained from Dr Lindsey Brown to use her contribution to this project. I would also like to thank her for her time and help.

References

*(1) The Telegraph Newspaper, Christmas Charity Appeal 2010: Dogs for the Disabled, [Online] Available from: http://www.telegraph.co.uk/news/telegraphchristmasappeal/8141206/Christmas-Charity-Appeal-2010-Dogs-for-the-Disabled.html , [Accessed on 24 March 2011]

(2) Dogs for the Disabled, What we do, [Online] Available from: http://www.dogsforthedisabled.org/what-we-do/ [Accessed March 21 2011]

(3) The national autistic society, About Autism, [Online] Available from: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx][Accessed March 21 2001

(4) Kristina Hughes, Everything starts with A, [Online] Available from http://autism-somethoughts.blogspot.com/, [Accessed on 23 March 2011]

(5) The Telegraph Newspaper, Christmas charity appeal: meet Jude’s four legged saviour, [Online] Available from http://www.telegraph.co.uk/news/telegraphchristmasappeal/8148888/Telegraph-Christmas-Appeal-Meet-Judes-four-legged-saviour.html, [Accessed March 23 2011]

(6) Graham Scambler (ed.), Sociology as applied to medicine, edition 4, London, Saunder