Results of the Dept. of Health Survey: Hospital Inspections – Led by Patients

In May 2012, we invited MDS patients and carers to take part in a Department of Health web-based survey on what matters to patients and their carers about being in hospital (see our News post). The preliminary results of the survey, ‘Hospital Inspections – Led by Patients’, have now been released.

A total of 3,153 eligible people (those that have been a patient in hospital within the past two years or were a carer) responded to the survey from a range of age groups, ethnic backgrounds and disease types. The majority of respondents were: 61 years or over (44% of respondents), Caucasian (84%) and female (63%).

The Department of Health is seeking clarity on the relative importance placed by the respondents on different aspects of the hospital environment. Respondents answered questions regarding their experiences of cleanliness of hospital areas, food quality and service in hospitals, aspects of privacy and dignity whilst in hospital, linen and other standards of the hospital environment.

To see what respondents reported as most important aspects of what makes a good hospital environment, click here for full results.

Anna Sőrman from Access Advocacy Ltd, the research body who conducted the survey on behalf of the Dept of Health, said: “The views and comments which have been gathered have made a huge contribution to the development of [a] new assessment form.  The questionnaire will be piloted in the coming weeks to ensure that it really does help to drive up standards of care, a commitment made by the Prime Minister earlier this year.”

Monday 19^th November 2012 

Mary Ward House, 5-7 Tavistock Place, London WC1H 9SN

 

 

 

The UK MDS Forum is hosting an education day in London on 19/11/12.

The UK MDS Forum are a group of clinicians and scientists from around the UK who are interested in the clinical and scientific aspects of MDS. It was established three years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials.

This is an event for clinical staff only. Please inform your doctor or nurse!

We would like to encourage patients and members of MDS UK to inform their GP, local haematologist, or nurse about the event by taking them a copy of the programme. The programme can be downloaded here. Travel information for the venue can be downloaded here.

We appreciate your help in raising awareness of the UK MDS Forum and their work!

 

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.

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/