Central Line Holder – A Bag for Hickman Lines

If you are using a Hickman line – we have received the following tip and new device from a patient, Sarah Cheeseman, who invented a special holder that makes the central line a little more comfortable.

See below an image of the bag for use with Hickman lines:

 

Check Sarah’s website www.centrallineholder.com for more information and images.

She devised the product following her own experience.   She is now looking for patients to test it and review the product. Click here for contact details.

We thought we’d share our 10 minutes of excitement at King’s College London and the hospital – when the Olympic torch procession made its way through sunny Camberwell – and along Coldharbour Lane, passing the Rayne Institute – where much of the King’s haematology research takes place.

The Rayne also used to be our head-office – before we moved to the hospital itself.

Today the street was filled with King’s staff and happy Camberwellians.

The torch was carried by a King’s member of staff.

Last Wednesday in Harrow it was carried by Dr Ed Glucksman – who is the Clinical Director for Trauma and Emergency Medicine at King’s – and has worked there for 25 years.  An truly amazing and nice person.

We took some photos and included some familiar staff from the haematology department:

Here is a link to the King’s website with more information:

http://www.kch.nhs.uk/news/public/news/view/10695

Enjoy!

 

Participants needed for a survey regarding issues of access to medicines.

This survey is being conducted by a researcher at LSE – London School of Economics – as part of a study looking at problems patients have in accessing their medicines.

Please will you help by completing the survey if you are a patient?

The link to the survey is:

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dEE0dFVxQTJzWUZqZmFnTjBfWENNSkE6MQ
(you may need to cut and paste this link)

Here is also the official introduction to the survey:

This survey is about patient access to branded medicines in the European Union. Patients in the European Union may face difficulty when trying to access both branded and generic medicines. We want to understand the types of barriers patients have faced in the recent past and how these barriers have impacted (or are likely to impact) access to medicines and quality of care. Understanding these barriers will help further research and policy to improve access to medicines. Demographic information is only used to describe the types of individuals completing this survey. Your responses are confidential. By taking part in the survey, you voluntarily consent to be a participant in this study and to answer the following questionnaire to the best of your ability. If you would like to see any other information about the Access Survey, please browse the European Patient Research Network website (http://eprn.wordpress.com).

MDS UK is featured in the Times Newspaper !

Click here to read the news article on rare diseases featuring MDS UK – and the issues faced by small organisations representing rare diseases and rare cancers – including problems about access to treatment, clinical trials, funding generally and low awareness amongst the general public, patients and GP’s.

This article was published in the Times Tuesday July 10th, 2012.

© The Times <07 2012>

Also featured in the article are – Myeloma UK, Cancer Research UK, Rarer Cancers Foundation, GIST, Cancer52 – and many more are listed.

Cancer52 helped to set up this interview – this organisation got its name because 52 per cent (recent statistics show an increase to 53%) of UK cancer deaths are from the less common cancers.
Despite this, the less common cancers remain severely under represented and under-funded across all areas, including policy, services and research.
Cancer52 is an alliance of more than 50 organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases.  MDS UK is a member of Cancer52.

http://www.cancer52.org.uk/

www.myeloma.org.uk/

www.cancerresearchuk.org/

 

 

Sapacitabine continues to show promise in myelodysplastic syndromes patients who have failed treatment with Vidaza or Dacogen, according to results from an ongoing multi-center Phase 2 trial.

Click here to read the full article on The MDS Beacon.

Click here to watch a European Journal of Cancer (EJC) video discussing:

How to address the key challenges in medical oncology

As the video description states: Why are there persistent equalities in cancer outcomes across Europe? What can be done to address the impending shortage of medical oncologists? What needs to happen before personalised medicine becomes routine in clinical practice?

Martine Piccart, incoming President of ESMO, discusses these and other issues facing the profession in this month’s EJC News Focus. She outlines ways in which the organisation will make an impact in the next two years and beyond.

Rare Diseases UK have been contacted by Julie Cook, a freelance journalist for women’s magazines such as Bella and Women’s Own, who has an interest in rare diseases.

She writes for the health pages of these magazines and is interested in doing an article on a family affected by a rare disease that they would like to raise awareness of. The article could include the family talking about how a rare condition affects their lives and what help they get and how they can perhaps help others by raising awareness of the condition.

If you are interested in taking part, please contact Julie at jules_77123@hotmail.com with a brief overview of your experience and a contact telephone number. If she thinks that you may be useful for the article, she will be in touch to arrange a telephone interview at your convenience.

MDS meeting for physicians and scientists in London:
21st November 2011
Organised by the physician group UK MDS Forum.
Please see full details and programme on website: here

MDS Patients – please inform your haematologist and clinical nurse specialist of this event.

NICE, the National Institute for Health and Clinical Excellence is running a survey about their work amongst the general public – and health professionals.  Please do take part – even if you are not familiar with all aspects of their activities.

To complete, here is the link to the short questionnaire that will be available throughout August and September.

And here is further information from NICE, regarding the purpose of the survey:

At NICE, we know that it is important that members of the public know about our guidance, to help them to understand the care and treatment that the best evidence suggests that they should receive.  We also know that there is more work needed to promote understanding and awareness of evidence based guidelines amongst the public, and we are hoping that you will be able to help us to do this.

To help us improve how we do this, NICE is conducting a survey to collect information on what patients and the public think of the way our current guidance is presented. We would be very grateful if you could complete a short questionnaire asking about your knowledge and experience of using our clinical guidelines. The questionnaire is a mixture of multiple choice questions and opportunities to provide more detailed replies.  The survey should continue running throughout August and September.

This survey is part of a larger study, DECIDE, which is a five-year collaborative project funded by the European Commission’s 7^th Framework Programme and is designed to research and improve the way healthcare evidence and recommendations are presented in clinical guidelines.

We would like to collect as many responses as possible to this survey.  I would be very grateful if you could help distribute the link to this survey, by

–          Filling in one of our surveys yourself or

–          Posting the link to a blog or a news feed for your organisation or

–          Sharing the link on your Facebook or Twitter feeds or

–          Sending the link to anyone you think might be interested in the survey.