Our Fourth Patient Workshop took place on Saturday, at Goodison Park, the home of Everton Football Club in Liverpool. It was a great venue, and the workshop was well attended. This week we talk about what we learnt from the day, and how it went.
The day began at 10am in the conference rooms at Goodison Park. The morning session was presented by James Moore from the mental health charity Mind. His talk focused around mental health, specifically looking at the mental health problems experienced by those with long term conditions.
Good Mental Health?
Many of us don’t know how to look after our mental health in the same way we understand our physical health. The talk from James gave a fantastic introduction to the many ways we can experience mental health problems.
His talk began by explaining what good mental health feels like. To do this he used a mental health spectrum ranging from 1 to 10. It was interesting to learn that good mental health doesn’t mean being happy (at number 1) all the time. Someone with good mental health will often keep moving up and down the spectrum throughout their lives.
Depression and Anxiety
James also taught us some of the ways in which people experience mental health difficulties. It was interesting to learn depression is not one condition. There are a range of different conditions classed under the bracket of depression, and all of them effect people differently.
We also learnt there are physical symptoms of some mental health problems, such as the sweating experienced by many who have anxiety. These symptoms are often treated as the problem because they are physical, with the underlying mental cause being ignored. Taking mental health as seriously as physical health is therefore crucial.
Post-Traumatic Stress Disorder
Post-traumatic stress disorder is often experienced by soldiers who have been though terrible things, and continue to be traumatised long after the events. However, James explained that post-traumatic stress disorder can be experienced in other ways.
For example, patients who have experienced a shocking or stressful diagnosis may develop post-traumatic stress. The mental health issues caused by dealing with a long term condition can sometimes be ignored, with all the focus on the physical illness rather than the mental impacts.
Self-Management
James stressed there is no magic cure for mental health problems. The only person who can give you good mental health is yourself. He emphasised the importance of understanding and accepting your own mental health, so you can self-manage it. He gave us 5 key ways to maintain good mental health for everyone to use, whether or not you have mental health problems.
These techniques included building strong relationships with those around you and making an effort to see friends. He also emphasised the importance of scheduling physical activity in to your daily routine, and to keep learning new things by attending classes, reading, or setting yourself new challenges. This will keep both your body and mind active. Giving generously to others and staying aware and appreciative of the world and people around you were also key factors in maintaining good mental health.
Nitisinone
Not only was the food fantastic at lunch, we also got a surprise treat of an exclusive tour around the Everton football stadium. As an Everton fan, Lesley particularly enjoyed this! The afternoon session kicked off after lunch with an excellent talk from Ted Lock on the origins of the drug nitisinone.
Ted explained how nitisinone was first identified in a species of bottlebrush plant in California. Somebody noticed the bottlebrush plant had no other plants growing around it, and nitisinone was identified as a weed killer. It was later identified as an effective drug for tyrosinemia type 1 during testing. Ted showed some amazing examples of the young lives this drug saved from this fatal rare disease. It is now a licensed drug for this rare disease, and after being licensed for tyrosinemia it was identified as a potential treatment for alkaptonuria.
Ted went on to explain the reason people on nitisinone must have a low protein diet to prevent any problematic side effects, such as eye problems caused by high tyrosine levels. It was particularly helpful for our patients to understand the underlying chemistry behind the side effects, emphasising the importance of their sometimes challenging low protein diets.
Discussion Session
The day ended with a discussion session in groups. As a patient group we always want to hear the opinion of our service users. This was the perfect opportunity to discuss some future projects, the National Alkaptonuria Centre (NAC), and get feedback on some of our information leaflets. It was incredibly helpful to get patient input in to our plans to put together a comprehensive information pack for all AKU patients.
The information we produce is for you, the patient and service user, so we want it to be helpful to you! If you have an idea of what information you would like included in the pack, please get in touch with Lesley, our Patient Support Manager. You can email her at lesley@akusociety.org