Long-term conditions
Managing the transition from child to adult services
Young voices for change
Two NHS acute trusts have addressed the issue of developing a patient-centred service for young people (see below). Both trusts achieved this through the framework of the Patients Accelerating Change (PAC) programme, developed by Picker Institute Europe and the NHS Clinical Governance Support Team (CGST). The initiative encourages trusts to use patient feedback to stimulate real improvements in the quality of care.
Since it began in 2003, more than 70 acute trusts have participated in PAC. The PAC approach is now being developed for primary care and mental health trusts.
Danielle Swain, quality improvement project manager for the Picker Institute and PAC programme lead, says: ‘ The Standards for Better Health have reinforced that working in partnership with patients is key to improving services across the NHS. Patients Accelerating Change has been devised to help organisations create an environment where patients and staff work together to ensure that services are truly responsive to patients’ needs.’
More information about taking part in PAC is available at
www.pickereurope.org
South Devon Healthcare Trust ‘Wings’ project:
Developing a seamless pathway for young people accessing adult services
The transition process as young patients move from Child Health to Adult Services can be difficult and sometimes traumatic for service users. This was highlighted by South Devon Healthcare Trust’s Young Patients Survey 2004 and subsequent engagement with young people through support groups.
Talking to both child and adult services professionals, it became apparent that they also found the transition stressful. Clearly child health and adult services needed to work together with young patients to create a smooth care pathway. A key part of this would be the process of informing and empowering young people to take charge of their needs while feeling both supported and prepared.
Having identified these transition issues, participation in PAC offered an excellent methodology for addressing the problem. The PAC model, along with its programme of seminars and networking opportunities with other trust representatives, provided a valuable mechanism for the South Devon Healthcare trust team. Working with patients, their families and carers, as well as professional stakeholders, was vital in ensuring that the project identified and addressed specific problems effectively.
Led by then directorate manager for Child Health Services Cathy Ellingford, research into transition good practice was carried out and mapped against the Trust’s existing service. Specialist nurses used questionnaires to capture first hand the ideas and needs of young people, both pre-and post-transition. Stakeholder events were then held with families, young people, board members and medical staff from adult and child services.
When all this information was brought together, the team realised they had a significant project on their hands. They implemented a number of project management tools from the Universal Improvement Company, including cause and effect diagrams and applications developed by Aston University, to stay focused on what was dubbed the ‘Wings’ project.
Three chronic conditions were chosen as pilots - diabetes, epilepsy and cystic fibrosis. It was found that, although transition clinics already existed in some cases, they weren’t meeting patient requirements. Clinicians were focusing on providing a medical handover, but what patients primarily wanted was to know how their care provision would change.
In light of this, an innovative transition clinic format was developed and tailored to the requirements of each condition. The first pilot clinic was held in March 2005 for diabetes patients. Run almost like a parents’ evening, families saw clinicians in turn but also had the opportunity to socialise and gather information. National patient support groups were invited to set up stands providing details for patients about wider topics like insurance, employment and learning to drive. This system was instrumental in providing an environment in which young people could undertake the transition process at their own pace and feel in control and comfortable with the change.
The ‘Wings’ project was challenging for all concerned as no extra time or resources were initially available and this resource gap had to be creatively managed. The project team was able to raise money through corporate sponsorship and being adopted as the local paper’s Charity of the Year.
Results from the project have been excellent. The Trust has succeeded in placing users at the heart of its service and achieved a streamlined, flexible referrals pathway. Written information that addresses issues identified by young people themselves as relevant and useful has been produced and is consistently available across all services they access.
There have also been other benefits, most notably the opportunity for core team members to develop their project management skills within a working environment that is both sociable and effective.
Following success in the three pilot areas, it is hoped that the project can now be expanded to other conditions. The achievements so far will provide the evidence to put forward a strong argument for investment in the next phase of its development. The team has also been able to map its achievements with ‘Wings’ against other NHS targets, ensuring that the project delivers best value against a number of indicators.
In summarising its achievements, Cathy said, “‘Wings’ has demonstrated that patients can contribute directly to the improvement of NHS services and many of their ideas have proven to be not only realistic but cost effective. Working with the PAC programme has also encouraged a more patient-centred approach throughout the service, introducing a ‘continuum of change’ which resonates throughout the Trust.”
Cathy Ellingford is now the children and young people’s lead at Teignbridge, South Hams and West Devon primary care trusts
Queen Mary’s Sidcup NHS Trust ‘KIPS’ project:
Making the voices of younger patients heard
Whilst a key priority for the NHS is improving the patient experience and developing services based upon their preferences, this can be very challenging when trying to develop paediatric services as conventional methods for gathering service user feedback are not always effective with children.
Annie Lawson, head of patient liaison services at Queen Mary’s Sidcup trust, felt strongly that the Trust’s younger patients were not always afforded the same opportunities to comment or influence service development as adult users. Although a review of the data provided from the Trust’s patient survey programme identified communication and patient information as a common issue throughout the service, it was agreed that the most urgent focus should be the needs of paediatric patients.
Following the PAC model, a multidisciplinary steering group meeting was held to provide an opportunity for staff and professional stakeholders across both primary and acute organisations to discuss issues, agree key areas to target and identify an action plan. It was important to gain widespread support as any changes could impact on many teams, areas and specialties.
A communications strategy was also recognised as vital to the success of the project and with this in mind the ‘Kids Improving Paediatric Services’ brand was developed to help to market the project both internally and externally. The KIPS name has been very successful in gaining widespread support, not least from Premiership football team Charlton Athletic.
An initiative to launch KIPS included press coverage in the local and national press, as well as an email address for comments to be submitted electronically. However, following evaluation, it became clear that KIPS was failing to reach the Trust’s youngest users and the project team realised that its steering group had not included vital input from the children themselves. It was felt strongly that the young people should be provided with the mechanisms to speak for themselves rather than relying on others to comment for them.
To rectify this, the project lead decided to look at ways to simplify the process of capturing feedback. A child comment card was developed, using simple questions and attractive graphics with smiley or sad clown faces, to make them more user-friendly. The trust also introduced ‘Reporters’ Packs’, asking parents and children to keep journals on their experiences and use disposable cameras to capture what they saw. These techniques allowed staff to see their service literally ‘through the eyes’ of their young patients.
Links were also established with the local community through schools visits, meetings with community groups and the involvement of the Bexley Children’s Parliament. Local secondary schools were asked to contribute to a KIPS Magazine which was distributed on the children’s ward.
The project has succeeded thanks to the extraordinary commitment of service users, staff and the community. Although KIPS had no dedicated resources, fundraising activity with Charlton Athletic, local publications and a charity golf tournament has helped to bridge the resource gap.
Through KIPS, the Trust has established a system to continuously monitor its services and involve young users in designing the paediatric patient journey. It has encouraged staff to value and act upon their patients’ feedback, as well as helping service users to be actively involved in their care.
Regular reports based on the results from the comment cards are produced and circulated for consideration. One of the clearest messages has been about the ward facilities - although they were recently refitted and are now very attractive, older children made it clear they felt the ward was too focused on the needs of younger patients. In light of this, the Trust is currently developing an adolescent common room with activities for older patients.
A 14 year old girl with brittle bone disease who had experienced the ward both before and after KIPS was recently asked about her experiences of the project. She said it made her feel proud and privileged to know that her opinions were valued and that services were being shaped around her needs.
It is also hoped that KIPS will have a long term effect on its participants. Children are the adult users of tomorrow and by building trust and confidence in the value of their contribution to the NHS at an early stage, this may lay the foundations for a lifetime of patient public involvement (PPI). KIPS children will grow up with the skills to participate and assist in developing a truly patient-centred health system.
An additional benefit has been the forging of stronger community links and the insight gained by the entire Trust into what can be achieved from implementing an effective communications strategy.
The KIPS project has received wide acclaim, including being regional winners for London in the Department of Health’s Health and Social Care Award for Children’s Care in July 2005.
10th November 2005
When know means know
By Dr. Jo Ellins
As opportunities for patient choice and involvement grow, so too does the need to provide patients with high-quality information about their health and healthcare. Such information is essential if patients are to understand the choices available to them and make informed decisions about their care.
The prospect of electronic booking at the point of referral, through the delayed choose and book initiative, presents both a challenge and an oppportunity for the issue of health literacy. Without greater knowledge, choice could widen inequality of access - but the technology could also act as a catalyst for improvement.
Read the full article
Connecting for Health
The ‘Choose and Book’ programme, which aims to offer patients a greater choice of hospital or clinic and more convenient appointments, comes under the umbrella of the larger government programme ‘Connecting for Health’. Its primary role is to deliver new, integrated IT systems and services to help modernise the NHS and ensure care is centred on the patient. The new computer systems and services will connect over 100,000 doctors, 380,000 nurses and 50,000 other health professionals.
Also included in the ‘Connecting for Health’ programme are the following projects: The ‘NHS Care Records Service’ (NHS CRS), ‘Electronic Transmission of Prescriptions’ (ETP), new ‘National Network’ (N3) to provide IT infrastructure and broadband connectivity for the NHS, ‘Contact’ a central email and directory service for the NHS, ‘Picture Archiving and Communications Systems’ (PACS) and, ‘IT supporting GPs’ which includes the Quality Management and Analysis System (QMAS), support for the Quality and Outcomes Framework and system for GP to GP record transfer.
www.goodmanagement-hsj.co.uk/pdf/connectingforhealth
‘CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved’
David Gustafon et al, International Journal of Medical Informatics.
Next steps in Choosing Choose and Book Conference
8th December 2005 , Earls Courts Conference Centre, London SW5
Kingston PCT: sexual health
If you put together two problem areas like sexual health services and primary care for younger people, you might expect to get into trouble. Kingston primary care trust's KU19@YMCA defies such expectations.
Read full article
More information on contact details, times of clinics and further information on sexual health services run by Kingston PCT.
More information about the KU19@YMCA project, including the development of an innovative text messaging service for under 19s.
To learn more about changing the way young people’s services are delivered across the sectors, how to integrate across different agencies, and how to engage service users, register to attend the upcoming HSJ conference:
‘Developing integrated children’s Health Services’ conference
23 November 2005, Earls Court Conference Centre, London SW5
Hinchingbrooke: cataract surgery
At the other end of the age spectrum, the direct referral scheme for cataract surgery at Hinchingbrooke Hospital trust has made an equally great impact. It gives mainly elderly patients an accessible, patient-centred cataract service.
Read full article
Direct referrals of cataracts in Huntingdon: Sharing Good Practice
Treatment Centres: Delivering Faster, Quality Care and Choice for NHS Patients
Department of Health (2005)
Similar reductions in waiting lists for cataract removal to Hinchingbrooke Hospital have been achieved through the IS treatment centre programme. Its highly specialised treatment centres have decreased waiting lists for cataract operations from 5 removals per provider per day to an average of 39 per provider, per day. This higher rate is achievable to them by concentrating on a single procedure, in a modern purpose built unit.
‘Cataract Assessment and Direct Referral: Stockport Optometrists take the initiative’
Jack Sharp et al (2003)
A further example of collaborative working producing excellent improvements in service lead by Stockport Primary Care Trust, Stockport NHS and Stockport local Optometric Committee to develop an optometric lead cataract assessment and direct referral scheme.
‘Action on Cataracts: Good Practice Guidance’
NHS Executive (2000)
The NHS Executive produced a report to assist managers and health professionals review and improve the management of cataract services.
To learn more about streamlining services and linking in with the private sector to improve waiting time please register to attend the upcoming HSJ event:
Redesigning Diagnostics to Improve Waiting Times
7 December 2005 , Ibis Hotel, London SW6
Manchester : COPD readmissions
South Manchester University Hospitals trust found that chronic obstructive pulmonary disease is its single most common cause of patient admissions - in 2000-01 it accounted for nearly 2,000, with an average length of stay of 8.34 days.
Read full article
‘Inhaled Corticosteroids in Chronic Obstructive Pulmonary Disease - Results from Two Observational Designs Free of Immortal Time Bias’
Victor A. Kiri et al (2005)
An article published in the American Journal of Respiratory and Critical Care Medicine questioned the validity of previously reported associations between inhaled corticosteroids (ICS) and reductions in mortality and re-hospitalisation in observational studies. Using time-dependent versions of statistical survival models, these studies have suggested immortal time bias as responsible for the proposed beneficial association.
‘Factors influencing emergency medical readmission risk in a UK district general hospital: A prospective study’
Georgios Lyratzopoulos et al (2005)
This report examines the effect of various patient and disease factors on the risk of emergency medical readmission. This issue is of particular importance, as over recent years increased emphasis has been given to performance monitoring of NHS hospitals, including overall number of hospital readmissions, which however are often sub-optimally adjusted for case-mix.
More information specifically pertaining to heart and lungs service at South Manchester University Hospital trust.
