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Published 5 December 2014
Patients and carers are angry that the patient journey is far too fragmented and are frustrated at having to repeat their histories. Many people do not understand the divide between free NHS care and means-tested social care. Change is urgently needed.
Some commentators feel that, for patients with multiple morbidities or contact with several services, there should be a default setting that means their clinical data is more widely available. This would be a practical way to avoid repetition and frustration on both sides.
Integration can help redesign systems around the patient or condition, rather than around organisations providing care or treatment. For instance, Brighton and Hove Integrated Care has created Care Beyond Boundaries, which brands services – anxiety, depression or musculoskeletal – rather than the organisations providing them.
“People are very dissatisfied. They have growing expectations that they should not have to be assessed and reassessed and tell their story to three, four or five different people in a week,” said Executive Director Zoe Nicholson, adding that the care community needs to go further.
“We need to support and empower people to be the expert patients that they are; empower them to utilise the resources that are available to them, from the NHS and other providers. Our ambition is to create a service that is organised around people’s goals.”
But Julian Emms, Chief Executive of Berkshire Healthcare NHS Foundation Trust, said that the problems start with the systems providing care in its widest sense:
“People are, generally speaking, most grateful for their healthcare, but...people do not understand the divide between an NHS free-at-the-point-of-use and a means-tested social care service, especially when it’s the same team providing those bits.”
The system is too complex, he claimed. “I have 15 commissioners in my area: There are 7 Clinical Commissioning Groups (CCGs), six local authorities, NHS England and three regulators. Getting 15 people round a table is hard enough and you can spend a fortune getting governance arrangements in place that satisfy all of them.”
According to Dr Mark Spencer, the NHS Alliance new provider network lead and a GP in Fleetwood, Lancashire, the “very fragmented” state of care is one of the reasons people dial 999 or attend A&E.
“It’s crazy that this has not been sorted. You still have a system where one person prints out pieces of paper and hands them to another person in another organisation who manually inputs them into a computer. We need to establish a system where a person who goes to the pharmacist with an eye infection gets the same service as if they attended A&E – there are algorithms for this sort of thing. If you phone the practice complaining of breathlessness you should expect the same consistent algorithms and not have the receptionist telling you to dial 999.”
Dr Muhammed Ali is Clinical Director of the North West London Integrated Care Programme, which is integrating care across eight London boroughs. He said that part of the problem is how structural changes, such as downsizing hospitals by centralising for high quality patient care, are interpreted.
“We have had a number of recent closures of A&E’ that have been publicly translated – by the media – into ‘hospital closures’ and, hence, the tortuous challenge undertaking these changes.”
But Thirza Sawtell, Director of Strategy & Transformation, NHS North West London Collaboration of CCGs, puts an optimistic spin on the situation:
“We would find integration much harder if everyone was saying everything is fantastic. Our narrative is that we are going through major reconfigurations so that care can be provided in a more appropriate place – therefore, we are organising care around people rather than around organisations. We like to give examples of changing care in this way rather than resorting to management speak.”
Information technology and data sharing are key to enabling seamless care across organisations yet remain some of the most challenging areas, said Anne Crofts.
“The Law Commission’s recent report on Data Sharing (July 2014), following a public consultation, recognises that law reform is needed to clarify the legal framework for sharing data among bodies delivering public services.
"There is little evidence that unlawful or improper sharing is a significant issue among such bodies – data breaches reported to the Information Commissioner in the health sector tend to be accidental data security incidents, rather than issues about the legal basis for deliberate data sharing between organisations.
"There should be no legal reason why members of care teams drawn from multiple organisations can’t currently share patient data in order to provide care to that patient, although clearly there must be safeguards around the sharing process to preserve public confidence.”
There is concern that difficulties in agreeing frameworks for data sharing will increase when new EU data protection legislation takes effect next year.
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