Addenbrooke's Charitable Trust

Patients and their families

Supporting patients is at the core of our work, providing funding for specialist services, equipment and comforts that complement existing NHS-funded services.

Here are a few examples of recently funded projects: 


Smartphone games motivating children with cystic fibrosis

Background: Cystic fibrosis (CF) is a genetic condition that affects both the lungs and digestive system. Most people with CF will experience problems with lung function, which can drop to les than 20% of the value expected in someone with fully functioning lungs. A combination of physiotherapy and medication can help control lung infections and prevent the build-up of mucus that causes the damage. Children with cystic fibrosis often struggle to complete the daily physiotherapy needed to clear their chest, finding it repetitive and boring. As well as affecting their own health, this reluctance can cause much family stress.

The application: Will Jackson's young daughter hated her daily physiotherapy, blowing into her PEP (positive expiratory pressure) device, so he is creating a smartphone-compatible physiotherapy monitor, to turn the tedium into fun. 

Grant applicant: In partnership with the Cystic Fibrosis Trust, Addenbrooke's Charitable Trust was delighted to fund the Paediatric Respiratory Department £40,000 toward the manufacture of a number of monitors to standards required for a clinical trial.

Amount awarded: £40,000 from ACT’s innovation fund


 

Counselling for families who experience grief relating to pregnancy or birth

Background: Every year, sadly over 12,000 parents in the UK are grief-stricken by the tragic loss of their babies. Many more suffer miscarriage of their pregnancy. Some need help to cope with this trauma as well as support should they try for another baby.

The application: Petals is a charity that provides counselling for individuals and couples affected by stillbirth, miscarriage and trauma related to pregnancy loss and birth, and a grant was requested to continue this specialist service for patients at Addenbrooke’s and the Rosie.

Comment from the committee: “This is a very worthwhile service.”

Grant applicant: Karen Burgess.

Amount awarded: £15,000 from ACT’s unrestricted funds


Beads of Courage

Beads of CourageBackground: Having a baby on the neonatal intensive care unit (NICU) can be a difficult time for any family, with an extensive stay in hospital. Treatments can include respiratory support, blood transfusions and artificial feeding, to name but a few.

Application: Lisa Campbell, play specialist on NICU requested funds to start the Beads of Courage programme. The scheme was originally designed for children in paediatric oncology, but the Rosie has become the first hospital in the UK to roll out Beads of Courage for children being treated on NICU.

Through the use of beads, families can create a visual, tactile journey of their baby’s NICU journey. To start, parents have a choice of a special bag to keep their beads in and are given the NICU admission ‘turtle bead’, along with beads which spell out their baby’s name. All the beads have different meanings, yellow – overnight stay, red – blood transfusion, pink – respiratory support, etc. Beads are given on a daily basis depending on what the baby has gone through that day. It is then up to the parents to thread the beads in any way they like, allowing them to take time out from the stressful environment.

Comment from the committee: “Evaluation of this programme elsewhere indicates that it can be a positive coping strategy for parents.”

Grant applicant: Lisa Campbell

Amount awarded: £2,000 from ACT’s patient amenities fund


Information for patients considering genetic testing

Background: Women and men are more likely to develop breast cancer if they inherit a harmful gene mutation. They may also be at increased risk of suffering from other types of the disease. 

Patients face a difficult choice when deciding whether to undergo genetic tests to identify if they might be carrying a harmful mutation. In these situations, good advice and information is essential.

The application: The clinical genetics team at Addenbrooke's applied for funds to devise a pre-clinic information video for patients considering these tests. This initiative is designed to help patients retain important facts and provides an opportunity for them to consider their options before meeting with their specialist. It also gives doctors more time to productively discuss patients’ personal and individual concerns. 

Comment from the committee: "This video which would be viewed online by patients before their appointment would help enormously."

Amount awarded: £5,000 from ACT's unrestricted funds and £4,274 from the medical genetics restricted funds


Preventing falls in hospital

Preventing falls in hospitalBackground: Patients who have an extended stay in hospital can become lethargic which can impact on their mental and physical health. It can delay their return home and compound their listlessness.

The application: We received an application from the hospital falls prevention co-ordinator to run a series of 50 dance workshops for inpatients at risk of falling. The two-hour sessions are for patients of all abilities, regardless of their mobility levels. Some have very limited movement and others have dementia, but all patients can take part at their own pace. These sociable and engaging workshops are designed to enhance patients’ wellbeing, positively impacting on their recovery times so they can
return home more quickly.

As part of the grant application, funds were requested to independently evaluate the programme to demonstrate its impact on falls prevention and reduction.

Comment from the committee: “We are confident that this will result in an improved patient experience and have a positive impact on patient health and wellbeing.”

Grant applicant: Debra Quartermaine

Amount awarded: £9,000 from ACT’s unrestricted funds