Our Work with Professionals

SOFT UK works collaboratively with many organisations, from the NHS to umbrella genetic organisations, to small patient centred charity projects. 

We provide a variety of inputs to these organisations;

• Consultation
• Participation in research projects 
• Contribution to or collaboration on printed materials
• Conference presentations
• Face-to-face training at all levels
• Campaign involvement

NIPT Implementation - Public Health England

SOFT UK worked in collaboration with Public Health England on the training for professionals in respect of the NIPT Implementation in the Antenatal Screening Programme. 

More than 400 people attended the events. Most of the delegates were screening midwives, midwives, sonographers and obstetricians.

Some of the comments from the evaluation report are below:

• The training improved reported levels of confidence in discussing a diagnosis of Down’s syndrome, Edwards’ syndrome and Patau’s syndrome. The number of people reporting low levels of confidence post training decreased 7-fold when compared to pre-training levels.
• Delegates reported thattwo of the  the highlights of the training were:
  
  • hearing from parents of children affected by Down’s syndrome, Edwards’ syndrome and Patau’s syndrome and support organisations
  • learning more about Edwards’ syndrome and Patau’s syndrome

'The parent experience presentations were very emotional and thought-provoking and I will certainly change some of my practice because of them.'

FETAL MEDICINE MIDWIFE

Below are some of the slides from the Evaluation Presentiation of the Training: 

READ THE FULL EVALUATION REPORT HERE

Chesterfield Royal Hospital

SOFT UK also provide training to individual clinical settings. 

In 2018, SOFT UK Trustee John Capper  worked with the Chesterfield Royal Hospital to provide training for professionals working in their Antenatal Services. 

In July he gave a presentation to a group of obstetricians, paediatricians, midwives sonographers and other maternity staff.  John presented information on Trisomy conditions, the work of SOFT UK and most importantly his family’s story of being cared for in Chesterfield when expecting their son Jack.

Rebecca Cartledge, Antenatal and Newborn Screening Coordinator said: ‘We had some really valuable discussions and staff felt able to talk about other experiences of caring for families or delivering difficult news. All there felt very privileged to have heard your story and were so pleased there were able to attend, they felt that it made them question their practice for the better!’