posted 11 Mar 2019, 06:52 by Cherelle Augustine   [ updated 11 Mar 2019, 06:52 ]

This Sickle Life

Your expertise needed to support young people!


We invite you as an expert in your field to join young people on April 2nd at an innovative and interactive event to help shape services of the future. The Royal College of Paediatrics and Child Health (RCPCH) is working with the London School of Hygiene and Tropical Medicine (LSHTM) on a project to transform understanding, awareness and knowledge about a the UK's most common inherited genetic disorder that has a huge impact on young people as they transition to adulthood and adult healthcare services in London and across the UK. We believe that in order to start the journey to creating lasting change, children, young people, families, patients, specialists, and stakeholders from a wide range of sectors such as yours need to be involved. 


On April 2nd 2019 from 10am – 4pm, we will be running “This Sickle Cell Life”, sharing findings from the 3 year research programme conducted by LSHTM. We will then invite attendees with and without Sickle Cell / Thalassemia experience, to help co-produce a range of useful materials that can be used by your colleagues, peers and your sector to better understand how to support young people and families living with these conditions now and into adulthood. 


The event will be interactive and workshop based, with young people, young patients, workers and decision makers from a range of backgrounds and disciplines. Attendees will have the chance to learn about what young patients need from services such as health, education, leisure and social care services to support their journey with Sickle Cell / Thalassemia whilst sharing their sector expertise to help develop messages and achieve hopes and wishes.


It is important to the success of the project to have your insight as part of the day and we really hope you or a colleague will be able to join us.


If you would like to find out more about the project, please check the Sickle Cell Life twitter or the Sickle Cell Life projectpage . I have also attached a team flyer for the Children and Young People’s Engagement Team at the RCPCH who lead the RCPCH&Us Network to ensure that children and young people are actively involved in shaping healthcare and policy across the UK.


To confirm your attendance or suggest a colleague, please contact Emma Sparrow at RCPCH via and_us@rcpch.ac.uk by March 11th.


posted 24 Jan 2019, 03:27 by Cherelle Augustine   [ updated 21 Feb 2019, 03:00 by Derryn Lovett ]

& Early Years

J.O. Warner OBE MD FRCP FRCPCH FMedSci, academic lead for our Early Years theme and Professor of Paediatrics Imperial College.

"The NHS Long-term plan published in January 2019 emphasises the need to move towards the creation of “Integrated Care Systems” involving coordination between multiple agencies including; primary and specialist care, physical and mental health services, and health with social care. NIHR CLAHRC Northwest London’s Early Years theme’s research over the last 10 years has developed and implemented integrated care pathways for children with allergic disease and sickle-cell disease. Working with patients and carers we have developed disease specific Patient Reported Experience Measures (PREMs) which have been used to guide quality improvement initiatives.

The plan also focuses on early life often now known as the first 1000 days from conception to 2 years of age. While the main emphasis in the long-term plan is on mental health this period of early life offers many opportunities for prevention and early intervention to influence long term health outcomes and need for medical care. Our early year’s theme aims to “Promote a healthy start for lifelong health and wellbeing.”  We are researching health education programmes for expectant parents to improve immunisation up-take; breast feeding; recognition and home management of minor illness. Other studies are improving management of pregnancies of unknown origin; involving parents in the management of their infants while in neonatal intensive care; trialling interventions for maternal anxiety in pregnancy and strategies to improve pathways of management for preschool children with common acute problems."


posted 7 Jan 2019, 07:54 by Derryn Lovett   [ updated 21 Feb 2019, 03:02 ]


The NHS Long Term Plan builds upon all the quality improvement work that continues to be developed by individuals working across the health and social care sector.

Professor Derek Bell OBE, Director of NIHR CLAHRC Northwest London, remarked:

“I welcome the NHS Long Term Plan’s balanced portfolio of service improvement that reflects the needs of the population and 
individuals. The focus on prevention and mental health is also welcome. NIHR CLAHRC Northwest London has been working on many of the areas highlighted in the NHS plan including:
  • Improving rapid access to heart failure nurses so that more patients with heart failure, who are not on a cardiology ward, will receive specialist care and advice: Development of the Heart Failure Project
  • Improving early diagnosis in the community: testing for Atrial Fibrillation Screening Project
  • Improving Mental Health Services: SHINE Project (improving the physical health of people with serve mental illness)
  • Supporting patients with alcohol dependence in hospital: Alcohol Care Bundle Project
  • Supporting parents whose babies are on the neonatal unit: Better Use of Data to improve parent Satisfaction (BUDS) project (to improve communication between parents and healthcare professionals in neonatal units)."


posted 7 Jan 2019, 06:09 by Derryn Lovett   [ updated 21 Feb 2019, 03:01 ]

& Breathlessness

With today's release of the NHS Long Term Plan we'd like to give you some of the thoughts from our team.

Professor Martin Cowieacademic lead for our Breathlessness theme, who's work on our Atrial Fibrillation and Heart Failure projects, will have a large part to play in developing and leading this long term plan.
@ProfMartinCowie, Imperial College London Profile

“The NHS long term plan identifies where the biggest wins can be made right along the care pathway: identifying people at high risk of cardiovascular events such as stroke or heart attack, giving GPs better access to the key diagnostic tests to speed up diagnosis and appropriate care, improving access to specialists when patients are admitted to hospital with heart failure, and increasing access to rehabilitation to improve quality of life after heart attack or heart failure. Now that the key areas have been identified, local services need to focus on these issues to deliver improved care and experience of care for those living in England. NW London CLAHRC has been active in all of these areas, and the new national plan adds impetus to its work”.


posted 1 Nov 2018, 09:23 by Cherelle Augustine

Hand and Wrist Virtual Fracture Clinic Pathway

Most common fracture presentation to A&E departments, UK

Hand and wrist fractures are the most common fracture presentation to accident and emergency departments within the UK. Complications following both simple and complex hand and wrist fractures can have devastating consequences. The British Orthopaedic Association recommends initial assessment in a fracture clinic should take place within 72 hours and any surgery should be performed within one week. It was the experience of Raymond Anakwe (Consultant Trauma & Orthopaedic Surgeon) of Imperial College Healthcare NHS Trust (ICHNT) that adult patients presenting with hand and wrist fractures, experienced delays in: attending fracture clinics; operative treatment; and in referral to rehabilitation. This resulted in extended recovery times, sub-optimal outcomes, an increased number of hospital visits, and overall poorer patient and staff experience.

An initial retrospective clinical audit, showed that 31% (13/42) patients waited over 15 days and another 28% (12/42) patients waited between 8-14 days for surgery following fracture. Further analysis of these delayed patients showed that the most frequent reasons for delay is delay in initial clinical review at fracture clinic.

Introduction of a new pathway

The Hand and Wrist Virtual Fracture Clinic planned to ensure prompt access for patients with fractures to receive expert review within 72 hours, to achieve better patient outcomes, improve quality of care and improve efficiency of the system. In the pre-intervention clinical review model, 100% of patients were referred from A&E to the Hand Clinic for a face-to-face consultation with an orthopaedic consultant (average 10 days from referral to expert review, audit 2016).


A new pathway (See Table 1), incorporating implementation of e-referral and virtual review software was implemented to reduce the time between presentation and expert review. This led to accelerated triage of patients to one of three destinations: fracture clinic, hand therapy and direct discharge after initial presentation via Urgent care centres or ICHT A&Es.

A series of interventions were implemented:

  • On-line referral system replacing paper referral 
  • Text message / email system providing supportive information about injury, pathway and Virtual Fracture Clinic contact details 
  • Telephone support clinic 
  • Follow-up phone call to discharged patients responding to questions / providing specific advice 
  • Patient information leaflets developed and uploaded onto a public website 
  • Education sessions delivered to healthcare professionals working in four of the five affiliated referral sources


Following the introduction of the Hand and Wrist Virtual Fracture Clinic, 2,449 patients were referred to the service: 60% of patients (1,451) were referred to the Hand Clinic; 22% of patients (549) were discharged with information on how to self-manage their injury; and 18% (449) were directly triaged to hand therapy. The time to expert review reduced from an average of 10 days to an average of 1 day.

The tariff for face-to-face initial hand (fracture) clinic consultation is costed at £151 per patient. For this project, 2449 patients were referred to Virtual Fracture Clinic. In the traditional pathway, all these patients would have been referred to the hand (fracture) clinic incurring a cost of £369,799. With the introduction of the Virtual Fracture Clinic Pathway, only 1451 patients were referred for a hand (fracture) clinic consultation costing £219,101 and resulting in a potential cost saving of £150,698 (setup and running costs not included).


posted 8 Aug 2018, 08:31 by Cherelle Augustine

How interventions are spread: CLAHRC NWL PhD Student Sophie Spitters Wins second prize at the Research as Art Summer Showcase

The Imperial College London Graduate School organised their annual Summer Showcase on Friday 13th July 2018. The showcase aims to celebrate research undertaken by PhD students at Imperial and invites staff, students and visitors to find out more about their work via a poster and a research as art exhibition. Sophie Spitters, joined the research as an art exhibition, showcasing her NIHR CLAHRC NWL research, and won second prize. 

Her art installation, titled How interventions are spread’, aimed to communicate the reality of spreading healthcare improvement interventions, which often does not follow the expected trajectory. Read more about Sophie's experience in our blog


posted 21 May 2018, 06:49 by Cherelle Augustine

Remembering Emmanuel: Emmanuel Amuta Poetry Award

The Emmanuel Amuta Poetry Award is open to anybody between the ages of 10 - 15 years old who has sickle cell. If you or somebody you know is a creative person, match the above criteria and can write a poem about sickle cell of their life with sickle cell, we welcome you to apply for the Sickle Cell Society’s new Emmanuel Amuta Poetry Award. 

The NIHR CLAHRC NWL funded award will be given at the Sickle Cell Society's AGM on 21st July 2018. There will be three prizes (1st Prize and two runners-up) including gift vouchers and the chance to attend a poetry /creative writing workshop.

The Inspiring Emmanuel Amuta

The Emmanuel Amuta Poetry Award has been created in loving memory of Emmanuel Amuta who suffered from sickle cell and sadly passed away on 19 September 2017, age 14 years old. Emmanuel was a confident, caring and gifted young man most cherished by the Sickle Cell Society and all that met him. From a young age, Emmanuel enjoyed writing, rapping and performing his poetry. At the Sickle Cell Society’s AGM in July 2016 Emmanuel narrated his poem ‘A Beautiful Cell’ which earned him a standing ovation and encore. This award will be his fitting legacy.

Emmanuel Amuta - A Beautiful Cell

Emmanuel is a great inspiration to young people living with Sickle Cell Disease. A true #SickleCellWarrior who touched our hearts with his poetry and optimistic view on life. It is our honour to fund the award for this competition.

For more information how to enter the competition, please download the information leaflet or visit the following link.


posted 16 May 2018, 03:02 by Cherelle Augustine   [ updated 16 May 2018, 08:25 ]

Attending the BMJ Awards Ceremony 2018

The 10th annual BMJ Awards showcasing and inspiring excellence in healthcare took place on the 10th May 2018 at Park Plaza Westminster Bridge London. There were 250 entries across 15 categories, including cancer care, diagnostics, emergency care, and mental health.

NIHR CLAHRC NWL attendees on the night included Yewande AdelekeInformation Officer for Public Health and Information Intelligence Theme, Susan Barber, Improvement Science Manager for the CLAHRC NWL Frailty delivery theme and Liz Evans, Mental and Physical Wellbeing Theme Lead and Delivery Programme Manager. Joining them was Brian Turley Award Winning, Patient-Centred Inflammatory Bowel Disease (IBD) Care Model Team based at St Mark’s Hospital, LNWUH NHS Trust who were shortlisted for the BMJ Patient Partnership award and St Luke’s Hospice Woodgrange Centre team who were shortlisted for the BMJ Palliative and Hospice Team of the Year award for their application of quality improvement methods in a hospice.

IBD Team St Mark's Group Photo - BMJ Awards 2018ST_LUKES

The teams underwent a rigorous selection process, which included shortlisted teams giving presentations to a panel of judges. St Luke’s Hospice Woodgrange Centre team were rated top 6 out of 30 applicants for the BMJ Palliative and Hospice Team of the Year award and the Patient-Centred Inflammatory Bowel Disease (IBD) Care Model Team were endorsed as highly commended by BMJ for Patient Partnership. 

Visit our blog to learn more about BMJ finalists' projects from the St Luke's Hospice Woodgrange Centre team and Patient-Centred Inflammatory Bowel Disease (IBD) Care Model Team.


posted 8 May 2018, 10:01 by Cherelle Augustine   [ updated 22 May 2018, 08:34 ]

Brian Turley Award 2018 – Winners and Runners-up Announced!

The London-wide Brian Turley Patient and Carer Involvement Awards took place at the NIHR CLAHRC North West London Spring Collaborative Learning Event on the 26th April 2018. The awards, presented by Simon Denegri (below centre), National Director for Patients and Public in Health Research, celebrate and promote patient and carer involvement in healthcare research and improvement.

“Once again, it is been a pleasure to read about all of the projects and my sense is the quality of the applications overall is even better than last year which is heartening. Lots of useful tips and the common theme seems to be, we should have started involving patients and carers earlier. Very useful!” 
– Brian Turley Award Judge Jocelyn Cornwell, Director Point of Care Foundation

The Awards were created in 2017 by NIHR CLAHRC Northwest London in memory of
Brian Turley a dedicated and committed patient advocate and disability rights campaigner who worked closely on a project that developed the ‘My Medication Passport. The awards aim to sustain Brian’s values and commitment to partnerships between professionals and patients, carers and the public in research and service improvement work across the Capital.
“It was an honour for me to be involved in this way. I found the detail of the submissions very interesting and informative. It was reassuring to see so much good work being done” 
- Brian Turley Award Judge Iain Baxter, Service User

There were fifteen entries from CLAHRC funded and supported work across the Capital. 

“The nominations where varied and interesting projects, the inclusion of different stakeholders was very good…. As a first time judge I felt that this was an opportunity to learn and develop a new skill” 
– Brian Turley Award Judge Charity Gondwe, Carer

The winners are as follows:


Patient / Service user / Carer with influence Award

Sophia Kotzamanis – a parent representative for BUDS [Better Use of data to improve parent satisfaction), an initiative aiming to improve the experience parents have when their baby is admitted to a neonatal unit.


Team working with patients, service users, carers, families and communities Award

St Mark’s Hospital Patient-Centred Inflammatory Bowel Disease (IBD) Care Model at London Northwest Healthcare NHS Trust - The team involved patients and the public in a programmes to improve outpatient monitoring for patients with Inflammatory Bowel Disease (IBD) by addressing the mismatch between ‘need’ and ‘access’ to services.

Early Career Researcher/PhD student/Service User Researcher/ Fellow Award

Stuart Green, Public Health Research Fellow based at Imperial College London - Stuart was an integral part of a quality improvement initiative within a mental health trust which aimed to improve cardiometabolic screening of patients through the introduction of a comprehensive physical health assessment.

The winners will be awarded with the opportunity to work with graphic artist Sandra Howgate to prepare a visual representation of their work to promote and share their story with others. Last year’s winners – the PREPARE team at Imperial College Healthcare NHS Trust - produced the impressive poster below.

Runners up for the awards were the Alcohol Research Team at CLAHRC South London – Tackling the stigma of alcoholism (Team working with patients, service users, carers, families and communities Award), Emma Dunphy – designing a website for people recovering from knee surgery (Early career researcher/PhD student/service userresearcher/ fellow Award) and Robin Lomas UCL – Impact of Welfare advice in GP practices (patient/service user/carer with influence Award).


Each CLAHRC convened a panel of judges including senior researchers, early career researchers and members of the public and patients to consider the nominations and supporting evidence provided by entrants. In all cases they were impressed by the sheer variety of work in research and service improvement going on across the three CLAHRCs, and the uniformly high standard of entries. 

“Seeing experience and involvement embraced and championed is so fantastic. Working in this way is the future of healthcare; we need to embrace partnership working. Patients are part of the solution”
- Brian Turley Award Judge Ellie Wharton, Project Manager

“As a newcomer to CLAHRC, coming from a social science research context, it has been an interesting and illuminating experience to be a judge for the Brian Turley Awards” 
– Brian Turley Award Judge Sam Miles, Researcher

We have shared detailed feedback with all entrants and strongly encouraged them to seek channels to share their involvements stories through newsletters, websites and in journals.


posted 25 Apr 2018, 09:35 by Cherelle Augustine   [ updated 25 Apr 2018, 09:40 ]

The votes are cast and the results are in  the winners of the inaugural London wide Brian Turley Patient and Carer Involvement Awards have been selected!

All candidates have been informed of the results. Winners will be officially announced on April 26th at the NIHR CLAHRC NWL Spring Collaborative Learning Event at the Congress Centre in Central London.


We look forward to the presentation of the Awards by Simon Denegri, National Director for Patients and Public in Health Research. There's still time available to register for the event.

Our thanks to researchers, NHS and Public Health staff and of course patients, carers and users of services who took the time to put together nominations and entries,


We also recognise the work of judges from each CLAHRC who took the time to consider each award carefully, and provide detailed and constructive feedback for entrants.


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