Case Study

This initiative is the first of its kind to develop a collaborative regional approach to develop referral pathways for patients requiring timely access to life-saving treatment with therapeutic apheresis. The project was ambitious; we wanted to find a solution to service delivery problems across North West England. This collaboration responds to the NHS strategy whereby specialised services should be consolidated and are best delivered by centres of excellence. Strong leadership was required to change traditional service patterns which were failing patients and persuade clinicians to refer to a single service delivering the highest quality care. Within RLBUHT, leadership following a high-level incident led to a successful business case for the development of a regional centre of expertise. The service redesign engaged with patients from the start. Patient outcomes have improved dramatically with 100% survival and high levels of satisfaction. The service is now the provider of choice for rare conditions requiring apheresis’ supported by the development of a regional online roadmap which simplifies the referral process with a single point of access- The joined up working between the teams has strengthened the equity of access for patients in the Northwest under an umbrella of improved clinical governance. Our approach to the development of high quality service provision will be shared with others by developing a national service specification and working with commissioners; a similar project is now commencing in Yorkshire and The Humber and we hope that other regions will follow suit following our success.

Apheresis is a commonly employed method for the removal from the blood of harmful substances and proteins such as antibodies that drive various disease processes. All therapeutic apheresis (TA) procedures require the use of specially designed machines operated by experienced healthcare clinicians. The medical conditions requiring this are often unpredictable, severe and frequently require specialist medical and critical care as well as access to the apheresis procedure itself. Historically within the North West of England and North Wales, there was an absence of a standardised referral pathway for the management of patients requiring TA. Access to life-saving

treatment was very variable putting patients at risk particularly if they required urgent intervention. One of the conditions that presents as a medical emergency and needs urgent TA is a rare, life threatening condition called thrombotic thrombocytopenic purpura (see attached patient information leaflet for further information). The incidence is about 6 cases per million per year. Without treatment patients have a mortality in excess of 90%. TA dramatically increases the survival rate, but the treatment has to be commenced within 4 – 8 hours of presentation. In 2012 it was recognised that patients in the North West were dying due to delayed diagnosis and treatment and the service had to be improved.

As a joint collaborative between the North West RTC and NHSBT, a small project team was set up to review the current availability of TA within the region and to formulate strategy to improve this. Further collaborative work with the haematologists from The Roald Dahl Haemostasis and Thrombosis Centre at RLBUHT helped streamline the provision of timely specialised services for the clinical management of TTP and other conditions requiring TA.

1.The development of a robust referral pathway or roadmap for Therapeutic Apheresis (TA) in the North West of England and North Wales To understand existing provision of and gaps in TA service delivery,, a questionnaire (Survey MonkeyTM) was circulated to relevant lead clinicians in all hospitals in the region. The questionnaire aimed to identify the regional experience of TA service delivery and highlight any challenges encountered over the preceding 12-month period. The overall response rate was poor and as a result targeted phone questionnaires were conducted to achieve 100% from response from lead haematologists in the region. Haematologists were singled out as it was felt they were most likely to have experience of accessing TA service provision. The data

obtained was entered into an Excel� spreadsheet and analysed internally by a data analyst. Further intelligence into the regional challenges in accessing TA was obtained via two multi-speciality focus group meetings with lead clinicians, service users and managers. This was followed by a one day educational symposium delivered by national experts in the field.

Feedback demonstrated the regional appetite for uniformity of practice and standardisation of care with access to timely treatment 7 days a week, 24 hours per day. Using the feedback from the survey and focus groups, a series of referral pathways were developed which highlighted the access point for TA service delivery, depending on the patient�s underlying condition. Each Trust in North West England and North Wales was given access to a specific page on the Therapeutic Apheresis section of the hospital.blood.co.uk website http://hospital.blood.co.uk/patient-services/therapeutic-apheresis-services/how-to-make-patientreferrals-to-tas/referrals-in-the-north-west-of-england-and-north-wales/ The information was circulated to Trusts via the RTC network

2.The establishment of a regional TTP service at The Roald Dahl Haemostasis and Thrombosis Centre at RLBUHT. The complex and life-threatening characteristics of TTP justify the need for early referral and responsive�� management in centres with comprehensive multi-disciplinary resources. In an era where compromise of patient safety or experience is unsatisfactory, the provision of specialist-led, organised care for this patient group is essential. Patients and clinical teams continue to lack the knowledge, support and resources required to achieve consistently high levels of clinical care. This formed the rationale for development of a regional TTP Specialist Centre in RLBUHT; in addition, NHSBT had an established TA unit in the Trust. The regional service was established by the haematologists from The Roald Dahl Haemostasis and Thrombosis Centre following the development of a business case. This work was sparked by the late referral of a patient from the North West but outside the normal catchment area for Liverpool who died soon after arrival and before TA could be commenced. The service development was backed by both the RLBUHT and NHSBT and provided 24-hour access to specialist clinical support, including critical care and central line insertion as well as therapeutic apheresis. The service was launched simultaneously with the Regional Apheresis Referral pathways which improved referral times including agreement for a North West Ambulance blue light transfer to RLBUHT.

•  – RLBUHT is now the Regional provider of care for patients with TTP in the North West and further afield. It is one of only two regional services, the other being a long-established service at University College Hospital, London
•  – The referral and diagnostic process has been streamlined by the establishment of the North West Apheresis roadmap which provides easy web-based access to the relevant referral information, individualised for each Trust and specialty. In addition, recommendations for diagnostic testing are hosted on the site. Since 2014, there have been: a total of 2035 pageviews and 1428 unique pageviews.

With regards to patients with TTP, since the regional service started there has been 100% survival of patients referred to the centre.

• Time to treatment with TA reduced from days to less than 8 hours
• NO deaths due to no venous access
• NO deaths due to infection
• NO deaths due to delayed treatment
• 90% cases diagnosis confirmed by specialist testing. Link through the roadmap for request form. Previously rarely sent/contaminated/invalid sample
• Feedback questionnaire patients and carers overwhelmingly positive

Educational programmes have been held at local, regional and national levels. There has been meaningful and sustained patient involvement in service provision for this rare disease, thus recognising patient groups as key partners.

Quotes from referring Clinicians:

Consultant Haematologist from Blackburn: ‘The website is easy to use and is useful. Another of my colleagues who has used this recently also agrees’

Consultant haematologist from Lancaster: ‘The roadmap is definitely useful and now we feel safer when dealing with patients with TTP as can access services quicker. Definitely better and quicker than before!’

Quotes from patients:

‘The consultants were brilliant in their explanations and explaining what TTP was. I feel as you have all saved my life’

‘Day and night I was thinking I’m not going to see him again, this is the end. I fainted myself looking at him and ended up in the emergency department. I was there but my mind wasn’t working. The doctors tried very, very hard to bring him back from where he was and staff looked after us really well.’

‘Staff told me he had a 20% chance of survival. Later I found out they were trying to remain positive and his chances were closer to 10%. He had two cardiac arrests during the first 48 hours of treatment. If he’d had a third he probably wouldn’t have left the hospital alive.’

This is a great example of excellent collaboration across organisations- is truly a team approach to quality improvement. There has been multi-specialty input co-ordination under emergence conditions leading to dramatic increase in survival and patient/carer experience

• This change is truly a ‘Patient centred’ which helped streamline services for life saving treatment. These system level changes will have a significant positive impact on patient health outcomes as has already been demonstrated and improves patient experience.
• This initiative corrects the previously unmet need and has created processes that offer patients timely provision of optimal care and services.
• This is in keeping with the NHS Five Year Forward View and supports providing High care quality for All.
• This project directly supports the UK Strategy for Rare diseases and has established a specialised clinical centre to offer the best care and support for a rare but life threatening condition.

Successful improvement initiatives need careful planning and execution. Patience and perseverance are vital to carry out and sustain any improvement initiative.

•  – It is imperative to understanding the quality and safety of existing services through a comprehensive approach to collecting, analysing and discussing data prior to planning and finalising change strategy. Selecting the right team members is key to plan and deliver change. Seek out people to work with who are brimming with talent, energy, integrity, optimism, and generosity as part of the core team. Collaborative leadership works.
•  – Real change in improving quality and safety requires total team buy-in (inclusive of all stakeholders involved). Poor staff engagement and staff resistance is common and overcoming this may be an onerous task. Good and timely communication, transparency and clarity of information re the project, goals, progress and impact is important.
•  – Celebrate every success, however little and maintain momentum of the initiative.
•  – Use opportunities to share experiences and learn from others and to constantly improvise.
•  – Put the patient at the centre of service redesign and the rest falls in to place where patient safety and survival are the most powerful argument for change.