Foetal Alcohol syndrome (FAS)

Last term we learnt about a series of conditions with learning disabilities and brain maldevelopment. One condition we looked at was FAS, which is a spectrum disorder whereby babies acquire problems due to their mothers drinking during pregnancy. Common features include stunted growth, drug and alcohol problems, sexual deviancy, antisocial behaviour, ADHD-like symptoms, flat mid face, small head circumference, smooth upper lip, intellectual disability,

Within 2 weeks of finishing my neuroscience module I found myself working with a girl with this condition in the mental health rehabilitation hospital. She was 18 and was on a 6 month stay at the unit. She was aggressive and mentally unstable but she told me of her ambitions to learn psychology so she could help kids. She had been sexually abused twice and had previous drug habits. She also told me that she was always running away from her foster mum.

It's sad to think how different her life could have been if she hadn't been born with her condition. She seemed to follow the pattern that we were taught about at medical school. It is almost as if children born with FAS are predisposed to have difficult lives with significant statistics of suffers having drug problems and prison sentences. The patient I spoke to wasn't intellectually impaired but she did have most of the other features of the condition.

I wonder how hard it is knowing that problems could be prevented if your mother hadn't drank when pregnant. Obviously things are far more complicated than this; there are other environmental factors which contribute to a person and their mental health and it is difficult to know and understand the mothers' circumstances, but it does make you think.

Last night's dream

I've spent some time thinking about my recent shift at the mental health rehabilitation hospital and it seems to have crept into one of my dreams.

Last night I dreamt I lived within an institution because I had Scruft's syndrome (this isn't a real condition, merely a figure of my imagination). The main symptoms of Scruft's included problems with planning, intellectual disability and poor fine motor coordination but only at meal times (very odd but it is a dream after all!). I was lucky enough to not suffer from the intellectual symptoms, however because I was labelled with the condition I was forever being treated as if I had a lower IQ.

One of the activities we did was one where we had to pour soap mixture into different shaped moulds, using the colours indicated in the key given. I was chatting with the person next to me and accidentally poured blue into the orange mould. Before I had time to clean the mould and refill it, my support workers had already started marking down my mistakes on their clipboards which would 'confirm' that I had a learning disability.

This reminded me of the 1973 Rosenhan study where pseudo-patients we admitted to a psychiatric hospital after describing fake schizophrenic symptoms such as heading the sound 'hollow' and 'thud' in their heads. Once within the institution they were to act normally (rather than acting as if they had schizophrenia) however it took them many months before they were released. If people think you have a condition, they'll start treating you differently and wrongly interpret your behaviour to match the diagnostic manual. For example, if one of the pseudo-patients told a nurse that they didn't really have schizophrenia and they were playing an important part in a psychological study, this would probably be classified as a grandiose delusion (a symptom of schizophrenia).

For me, I felt this dream gave me insight into what stigma may feel like. I felt judged, frustrated and truly misunderstood. I had become Scruft's syndrome, I felt I was being treated as a condition rather than a person who needed help.

Thankfully this was only a dream and the rehab centre I've been working at is nothing like this. There are only 5 inpatients and the staff know them very well. They are very much treated as individuals; they all have their own stories, personalities  and many have complicated psychiatric backgrounds. I really enjoy working there and am touched that the manager offered me a full-time job after my performance on my first shift. Obviously I couldn't take it up as I'll be back to Brighton in January but I have been offered some extra shifts next week.

Losing someone special

Everyone will have that person they can go to at times of need. For me that was Sue, my academic tutor, who comforted me when I was flailing.

In my first term at med school, I found it hard to adapt to the workload after my year away. I tried to revise in the perfectionist style I used at A level; covering every detail and knowing the curriculum inside out. At Med school the shear content in the small time frame caused me to panic. Knowing that I would have to walking into an exam not knowing everything scared me, I was out of my comfort zone.

I had a timetabled meeting to get my portfolio signed off and I broke down. The thought of underachieving was too much. Sue was there for me, we talked about our home lives and I felt like she really cared. She was an interesting character with interests in art and literature. She was also an above the knee amputee from cancer. She emailed me over the holidays and invited me to meet her for coffee in town if I ever needed a chat. She was more than just a tutor.

We continued to meet up and email throughout the academic year and I was looking forward to see her after the summer. Unfortunately, my academic tutor group was met by the school secretary who had some devastating news. Over the summer the cancer had returned. We were assured, that although Sue could no longer be our tutor she would be around and would still be lecturing ethics.

I was really saddened by the news, such a bombshell to be dropped on her life. I knew she was planning a holiday to Sardinia, I bet she hadn't been able to go. She was probably spending her time going back and forth to the hospital. I went out and bought her an arty card. There were lots of cards with 'get well soon' and 'thinking of you' but they just didn't seem right. I got my whole tutor group to sign the card and have it to school office to pass on to her.

That weekend was when the real shock was. I logged on to my uni account to find an announcement from the Medical school's Dean about Sue. I could only assume this would be about the cancer returning and about her relinquishing some of her teaching responsibilities. It was far worse that I ever imagined.
The cancer was terminal and it had taken her.

It was such a shock, how could it all happen so quickly? We were given the impression that she was relatively 'okay' seeing as she was still at work. I felt so stupid to be faffing about that card when Sue was dying. She was actually dying. I can't imagine her family looking at the frail version of Sue. Her teenage children watching her suffer. I was supposed be revising for tomorrow's exam but I found myself reading her blog. It filled me with pain and sadness to know that she will never see her daughter graduate and won't be around to support her son through his uni application.

I tried not let it bother me but it really did. I didn't know her incredibly well but she was someone special to me.
The following week we had seminars on death and dying, the day of Sue's funeral. Why is it that things always work out like that?
It was too much, I had to leave the group. I couldn't get her out of my mind. I didn't want to get her out of my mind, she deserved thinking about but now wasn't the time to mourn.

My seminar leader came out to me to make sure I was okay. I was, it was just a bit too soon to be openly discussing death. I would have probably been okay if I didn't contribute to the session but that's just not like me, I like to get involved. I was mortified that my seminar group had seen me in tears. I felt weak, like people would think I'm too sensitive.

She reassured me that I was doing okay, she said you can't teach empathy and sensitivity. After some time, this made me feel better; I shouldn't be embarrassed to be emotional. We all get caught off guard sometimes, it's what makes us responsive human beings.

Writing this has given me the opportunity to reflect on the whole experience. Sue really was a special lady. I'm very glad to have met her and send my condolences to those she was close to.

'A chronic patient' or 'A patient with a chronic disease'?

This year, alongside our primary care placements we have started our portfolio on the life of a patient with a chronic disease. In the first week our new GP tutor took us to the patient's house so we could take a detailed history and to try and build up a relationship. 

Our allocated patient 'Mr J' is a gentlemen in his 90's who claims he is 'just getting old'. He can tell us that he's been to hospital a few times and that he has angina. He is immobile and has daily carers to get him up in the morning. He lives with his French wife and dogs, spending most of his time on the sofa; thinking fondly of the times when he could go for walks and fix up his garden. We later found out from the GP that the patient also has chronic heart failure, AF and renal tubular disease. Mr J appeared to enjoy talking to us and telling us about his life and his family, however his wife was keen to stay out of the way.

I sensed from the moment we were invited that we weren't really 'invited'. The wife begrudgingly offered us a chair to talk to the patient and went outside to smoke and scowl at us. I must point out that patients are briefed by the GP beforehand so they know what to expect- it wasn't as if the visit was unplanned! Despite this, we felt we had made good progress with Mr J; that was until the wife came in to ask us not to come back! My GP partners and I left the house feeling frustrated, confused and a little embarrassed. We were all very friendly and polite and had never come across this before. What would our new GP think of us?

On our arrival back at the surgery, we swallowed our pride and gave the GP an honest account of what had just happened. Thankfully he was very understanding and offered us empathetic smiles. He apologised to us for not finding a suitable patient for us to study and said he would speak to the couple about them withdrawing from the scheme and potentially find us a new patient.

A week before our next primary care visit, we received an email from the GP informing us that Mr J was back on the programme. This made me feel uncomfortable; having to try and build up a rapport whilst knowing that we're not really welcome their home. 

When it came to the 2nd visit, it was a similar experience as before with the wife hiding in the garden. We had already come to terms with her unfriendly mannerisms so we tried not to read too much into it. Things went well with Mr J and we only had a few things to ask before returning back to the GP practice.

As we were about to make tracks we were confronted by the wife who asked us what we were actually doing with her husband. She couldn't understand what we could learn from talking to him, she kept saying 'he could just lie to you'. She interrogated us further asking why we hadn't examined him if we were learning to be doctors.

This got us thinking on our walk back from the house; there could have been a number of reasons for her questioning. Could it be due to cultural differences? A biomedical view that a doctors' perceived role is to treat only illness? Or was there something she didn't want him telling us? It could even be her way of making us aware that she still wasn't happy with us being around.

This has made me really grateful that our curriculum includes a biopsychosocial  approach. Treating patients as physical diseases is so old fashion, it's all the other stuff that makes us what we are. Of course it is important to address health issues, however we must have concerns and considerations for social and psychological contributions.