LIVERPOOL SUPPORT GROUP

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Verbatum Student Comments

Thanks for giving us the opportunity to attend a group session. I think it was a good experience as I had never had the chance to attend a group before. I have only heard about such groups. It was beneficial to me because I could see the problems they had from a medical aspect as well as from the patient aspect as they told us problems they had experienced with doctors and other health care professionals. The patients were really friendly and willing to talk and share everything to us. I actually think it went quite well though I found that some patients had lots of information but there was a time constrain and therefore I wasn't able to get all the information. Other than that, I quite enjoyed it and would sign up for other upcoming sessions.

I enjoyed the whole atmosphere being able to actually speak to the patients and listen to their side of the story and their perspective about how the problems have affected them and how communication is so vital in making a diagnosis.

Miscommunication happens all the time and most of the time we fail to pick it up cuz it seems so minute but after last Saturday ive come to understand the importance in listening to the patient and picking up every single detail of their story.

It was rather short as I didn't get to speak to all of the patients and it would be great if I did but for me everything was amazing, well planned, I had a great day and im looking forward to the next event of any sort..(I felt that we actually made them happy by

making the initiative to hear them out and I really would want to do that for patients again- Hence hopefully there will be many more sessions to come)

Thank you so much Maggie. That was indeed an eye opener for me.

I thought it was absolutely fantastic to be able to hold a conversation with these patients who have had so much exposure to doctors and healthcare, and to gather and empathise with their opinions of us! It was a great opportunity to get 'constructive criticism' and thoughts on how we should be approaching patients and family members such as themselves. All students should take-up such opportunities as I think it's been the best way so far to reflect, develop and learn communication skills.

Sorry for the late reply. I thought that the patient group was a real eye-opener for me. It made me realise the importance of doctors treating patients holistically, rather than just focusing on the disease. It surprises me just how many of them felt that at some point during their treatment, they were unhappy with the choices that their doctors made. It was also a good experience for me to learn from the patients themselves, about their conditions and the stigma attached to them and the importance of psychological support in helping them pull through difficult times. My time spent there has definitely made me more aware of just how important communication skills is to a doctor and I will strive to draw upon my short but priceless experience and use it as a stepping stone in further improving myself.

 

 

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I found the pituitary patients group a very enjoyable experience, the members were all very welcoming and eager to talk to us about their conditions.

Firstly, it was useful from a clinical point of view. Now I have seen some cardinal signs of endocrine disturbance and pituitary masses in real life, such as opthalmoplegia and macroglossia, not just reading about them in a text book, I will always remember them. It was also useful to discuss the kind of symptoms the patients experience.

From a more general point of view, an important thing I learned is that though doctors are pressured to follow guidelines etc, this should not get in the way of treating patients as individuals. For example, in order to be eligible for growth hormone treatment, the patients GH must be below a certain level and they must have a certain score on the GH Qol questionnaire. However, it is possible that an individual patient has a GH level just above the cut off, but they could really benefit from the treatment, because for them that level is too low, despite not fitting into the official definitions of low.

It was obvious that many of the patients feel dissatisfied with the care they receive from the NHS. Several patients I spoke to talked about delays in diagnosis, and doctors not knowing much about their conditions. I think this is understandable because many of these diseases are very rare and most GPs will never have any such cases in their lifetime - eg only a couple of people per million have acromegaly. However, it highlights the importance of keeping an open mind when diagnosing patients, and maintaining a broad knowledge base. It also explains one reason why the support group is valuable to the patients - it is an outlet where they can share information which they might not necessarily get from the health service. Eg. About new drugs, and they encourage each other to be knowledgeable and confident when talking about their conditions with health care professionals, in order to get the best possible care.

I found the support group very helpful in giving on insight into the story of the patient from when symptoms first began, to how they live with their diagnosis. It was also good to hear what the patients had to say about what attributes they thought made a good doctor. It also gave me an insight" into diseases that as yet I have not come across and so this has given me cues to further reading.

I thought that the support group was very helpful for the patients that attended, and the literature was also very good.

I think that medical students should be able to have better access to support groups like this as I think that demand would be high and seeing support groups for different diseases would also be beneficial.