Through my work with our young service users I identified a huge need for something that would enable them to combine an understanding of their triggers, early warning signs or symptoms, and wellness strategies. And thought the journal would be a good solution for this.

Although the journal was originally aimed at young people, it was huge success with the adults and medical professionals who attended on the day.

They even suggested the following to make it suitable for them and hospital visits:

• A pocket inserts to enable them to keep hospital letters inside the journal.
• A habit tracker to monitor the intake of medicine and water consumed.
• Stick figures to allow the younger children to colour in where they felt pain.
• An A5 & A4 size versions
• A Child & Parent version.

Overall the feedback was outstanding, and all the participants have agreed to test up until our next workshop on 23^rd March 2019 Canada Water Library.

To book your place please use the following link; https://www.sicklecellsociety.org/scsll/

In the mean time be sure to download the journal if you too would like to test it out, as all feedback is very welcomed.

Click here to download the journal

You can download the slides from the event here

Feel free to contact me at linda.chic@sicklecellsociety.org for more information.

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At the moment, the programme welcomes people with sickle cell in North West London, whose centre of care is either Hammersmith Hospital or Central Middlesex / Northwick Park Hospital.

The workshop was divided in two sections.

The first section explained the difference between acute and chronic pain, and how the body produces pain.

And the second part addressed the difference between pain and suffering

If you have sickle pain or know someone who does and would like to attend the next workshop please email Imperial.Sicklecellpmp@nhs.net to register or contact linda.chic@sickecellsociety.org

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• Review, order and follow-up your regular blood tests and investigations, and monitor / review them for their iron status every 4-12 weeks
• Help you to better understand your condition and teach you effective techniques for self-managing it
• Follow-up with you via telephone
• Reduce the length of time you spend in clinic waiting to be seen

For more information please call Judith St Hilaire on 020 3313 4655 (Monday to Thursday 09.00 – 16.00) or email: Judith.sthilaire1@nhs.net

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Read more here; https://www.geneticalliance.org.uk/news-events/news/new-research-how-care-should-be-coordinated-for-rare-diseases/

For further information please do hesitate to contact Amy Simpson at amy.simpson@geneticalliance.org.uk, or myself at linda.chic@sicklesociety.org

The post BDB meets Genetic Alliance UK TO RESEARCH; HOW CARE SHOULD BE COORDINATED FOR RARE DISEASES appeared first on Sickle Cell Society.

“I am a 29 year-old adult trainee nurse with sickle cell anaemia and I am in my final year of training, aspiring one day to eventually become a sickle cell clinical nurse specialist or sickle cell community nurse. I chose to become a nurse because I had a keen desire to help other young people and adults who experience illness and ill health and who are going through the hardest periods of their life. Being ill, especially on an ongoing basis, is the toughest period of anyone’s life, it does not matter who you are, or what you do for a living, you could be an ordinary person living your life, you could be one of the most famous people in the world, you could be a ground-breaking scientist, or you could be the prime minister of the United Kingdom, illness and ill health can affect anyone at any time.

I can strongly relate to people who experience ill health, and because I have a patient perspective, I can understand what the person experiencing ill health may be feeling or going through.

I can do this in terms of thoughts, feelings and emotions, including thoughts regarding the present situation, and thoughts regarding their future. I also strongly relate to the relatives of the loved ones, who are experiencing ill health. I include everyone in the picture, in regards to a person experiencing ill health. For example, I like to prompt the patient’s relatives and ask them if they have questions regarding their loved one’s care and treatment plan. I also like to give advice and encourage them in any way I can.

Choosing to become a nurse is one of the best decisions I have made in my entire life. Prior to becoming a nurse, I experienced ill health and multiple complications on an ongoing basis; I saw little hope and felt like I had a bleak future. I had little confidence within myself and with other people. Choosing this career path has really helped me, in terms of appreciating what I have, and looking back on how far I have come. I have met some of the kindest, loveliest and wonderful patients and families, the good in humanity, and despite what they are going through, they understand that I am a student nurse, and I am looking after them, and doing my absolute best by them. I am looking forward to becoming a nurse, becoming a happier and free spirited person, and working in the field of Haematology, and making a real difference to people’s lives.”

For further information contact linda.chic@sicklecellsociety.org.

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After meeting with Kitwana on Tuesday 22^nd of May, he has kindly agreed to showcase some of the Breaking Down Barrier’s Publications (digital copies found here) in the Youth Centre, to allow the hundreds of service users access to them.

In addition to this, Kitwana is planning a huge event this summer so be sure to keep an eye out for it , or contact me at linda.chic@sicklecellsociety.org for more information.

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Imara are currently looking for 54 patients worldwide to take part in this Clinical trial for which 18 space have been allocated to patients on Hydroxyurea.

To be eligible you must meet the following criteria;

• Be aged between 18 and 50 years old
• Have Sickle Cell Anaemia
• Have not been admitted to the hospital overnight more than 3 times in the last year
• Not require frequent transfusion
• Not be pregnant

For more information about this or to take part in this clinical research please do not hesitate to contact Yemi at yemi.adelaja@gstt.nhs.uk.- Who is based at Guys’ and St Thomas’.

Overall, the event was a great success as lots of service users attended and were able to ask lots of relevant questions about taking part in this study. – See the video below

Here are some photos of the day;

For any more information please do not hesitate to contact me me at Linda.chic@sicklcellsocirty.org

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We provided members of the congregation with information on sickle cell, the screening process, and the new adult care standards we have recently released.

Working with Emma was a pleasure as her knowledge was really helpful when members of the congregation had specific medical queries.

Although we left some resources behind for those who couldn’t make it, if you require more information please use the links below for access to all our resources;

Breaking Down Barriers and Resources

Alternatively contact Emma at emma.gedeon@nhs.net or myself at linda.chic@sicklecellsociety.org.

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If you want to know more about the work that Breaking Down Barriers does then email me at linda.chic@sicklecellsociety.org

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