
Special Report: Mental Health
Physical and mental healthcare interact in complex and significant ways, and yet traditionally the NHS has treated the two as separate issues. Can digital shared records help address this unhelpful separation and improve patient care? Jennifer Trueland investigates.
As a psychiatrist, Ayesha Rahim has trained for years to develop an expertise in mental illness – and one of the key lessons is that it doesn’t exist in isolation.
A person’s physical and mental health are inextricably linked but this is not always reflected in how services are designed or, crucially, in the way that information flows between different parts of the health and care economy.
“People don’t exist in silos but care often exists in silos,” says Rahim, from the Royal College of Psychiatrists. “Having access to information means that you can make better clinical decisions.”
When talking about mental health services, it has almost become axiomatic to describe them as “Cinderella”. Chronically underfunded and still beset by stigma, even the budget announcement of a minimum £2 billion cash boost is unlikely to turn the mental health pumpkin into a carriage and send it to the ball.
Ahead… and then behind
Hardly surprisingly then that, when it comes to digital, mental health services have recently been felt to be lagging behind other parts of the system. This hasn’t always been the case, however. Digital pioneer Sarah Amani – who is now senior programme manager at Oxford Academic Health Sciences Network but was previously a mental health nurse and chief clinical information officer – says mental health was initially ahead of the game.
“It’s a bit of a paradox. The mental health world was using electronic health records ahead of other areas and most [trusts] went digital by 2009. But then not much changed in the next 10 years.”
This situation could be about to be transformed – and not because of fairy godmother Philip Hammond either. A growing recognition among key players including clinicians, vendors and senior managers that all parts of the system should work more closely together is galvanising action, with some areas already some way down the track to a shared record which integrates physical and mental health.
Health secretary Matt Hancock’s drive towards interoperability is only likely to increase the momentum, which is music to the ears of enthusiasts such as Rahim and Amani.
The benefits of sharing information are tangible, says Rahim, who holds the posts of deputy medical director and chief clinical information officer at Lancashire Care NHS Foundation Trust. Her own area’s shared care system – the Lancashire Person Record Exchange Service (LPRES) – means that with patient consent, data from the GP record and from acute and community providers can be made available to authorised members of the health and social care economy.
Improving efficiency and care
This is good for the service user, but also for the efficiency of services, she says. Take the example of a psychiatrist who wanted to prescribe a particular drug for someone’s mental health condition but who was aware the individual also had a heart problem. Previously, the prescribing decision would have had to be have been deferred until advice could be sought from the GP or cardiologist about the heart medication and any possible interactions.
“It could mean the patient would have to wait a few weeks and come back to see me for another appointment,” she adds. “But what I can do now is go into the service user’s record and look for myself. It can help me make a decision there and then without having to play around with phone call ping-pong or waiting to get information faxed over. It’s very powerful and has made a real, tangible difference.”
Real benefits flow when communications between mental health and other services improve, says Nike Harte, solutions director with Cambio UK. “Where it works, the impact is incalculable,” he says.
From Sweden to Scotland
He points to experience in Sweden, which he says is further ahead than the UK when it comes to integrating and sharing patient information across services. For example, Kronoberg County – where his company’s Cosmic healthcare information system has been in use since the early 2000s – has an integrated electronic patient record covering all of the health system, including mental health, and has been recognised as a pioneer by the European Commission.
“In Sweden they’ve been doing it for 20 years now, and to them it seems obvious that you provide better healthcare when you share information,” says Harte. The UK is following suit, he adds. Cambio has been commissioned to help Scotland take a similar approach, by supplying a national clinical decision support system across the country, starting in primary care with the aim to taking in everything eventually, including mental health services.
Harte believes that progress will speed up when systems deployed in mental health organisations bring real and immediate benefits to the clinicians who are using them, including clinical decision support applications that help with day-to-day patient care. “When it makes a real difference to the lives of clinicians, it will develop organically,” he says.
Michael Dolan, chief executive officer of CareWorks, is a firm believer in the value of bottom-up approaches to drive integration and information sharing. He points to Wales, where the company’s CareDirector EPR system is bringing health and community care together in what is known as WCCIS (the Welsh Community Care Information System). “We’re seeing huge potential with organisations working together that previously hadn’t,” he explains. “It’s going really well and achieving a lot, with around two thirds of organisations up and running.”
What has been particularly interesting in Wales, he reports, is that the process has been opt-in, meaning no organisation has been compelled to take part. “Nobody is forcing them together, and it’s been a very positive experience,” he says.
“Policy is the driver, but IT can show the way. On integration, for example, IT provides the opportunity for people to have that conversation, and provides the tool to help it to work.”
Recognising the potential of digital
There might be exciting developments now – and Dolan for one is a believer that the foundations are in place to make IT-enabled integration a reality – but why has it taken so long? And why have mental health services lagged behind other services in reaching digital maturity?
Rahim believes that organisations in the sector must recognise the potential of digital, something she says is already happening at her trust. “Mental health organisations have borne the brunt of cuts to the NHS,” she says. “But we have a really informed and enthusiastic board – they really get it. It [digital] is not a little box you have to tick – it’s a golden thread running through everything that we do.”
That’s not to say that everything in the garden is lovely, even where there is a will – and the requisite technology and agreements – to share information between organisations. “You have to make sure your records are in a fit state to be shared,” she says wryly. “You wouldn’t want to share inaccurate data.”
Amani accepts that a lack of financial investment in mental health is one reason for the lack of progress, but also points to cultural issues. “There’s a tendency for people to horde information rather than share it. Some of this is down to ignorance – people are misinterpreting data privacy law, although some clinicians are better than others.”
The need for bridges and sensitivity
There are particular issues with sharing mental health data, she concedes, with the stakes remaining lower for information about physical health issues. “It would be a very serious incident if someone’s schizophrenia were announced to the world,” she says. Nevertheless, she believes there are significant benefits to a person’s physical and mental wellbeing if services are joined up – and the electronic patient record has an important role to play.
“There’s a real need to build a digital bridge between primary and secondary care and mental health,” she says. She cites the case of a patient who puts on weight because of taking a drug for a psychiatric condition. The weight gain puts the patient at higher risk of heart disease and diabetes, both of which could be prevented if the patient’s GP is aware that the patient is being prescribed the medicine and that it has these side effects. “If the GP knows about it, they can ramp up the contact and monitoring accordingly,” she says.
She is optimistic that change is coming, and believes that the health secretary’s public commitment to digital health will help. But she also believes that senior managers must get behind it by, for example, by giving more support to chief clinical information officers to fulfil their roles.
As for Rahim, she doesn’t necessarily think there will be one “tipping point” where we move to one shared record for mental and physical health across the board. “I think we’ll get to the point where it’s happening – where it’s business as usual,” she says. “That will be good for clinicians and organisations – but most of all, it will bring benefits to the service user and that’s what we all want.”
6 November 2018 @ 09:51
NHS IT is an appendix to NHS so if NHS goes, NHS IT goes with it.
3 November 2018 @ 22:19
I shudder to think that NHS mental health records could be accessed or shared by any other health professionals. IAPT, (Improving Access to Psychological Therapies) arrived like an entity from a far off universe. They invaded our mental health service on a pretence.
IAPT was launched by Tony Blair who claimed that it was simply, “to get people back to work”. We may look back on this statement as another ‘45 minute warning’. IAPT spread rapidly and set about trying to kill-off the knowledge base of mental health in the UK. An industry pandering to many financial winners and where patients came last was born.
IAPT began to redefine the meanings of words, such as treatment, assessment, recovery, evidence, therapist etc. Many IAPT staff grabbed the possibilities for finance. They created an entirely dishonest and abusive process of ‘Smart Goals’ which included coercive pressure on patients – initially to misreport their condition and, eventually, misreport their ‘recovery’. Many IAPT patients carry a diagnosis on their records which were not created by experienced practitioners but from from the hunches of trainees, tick sheets, self-diagnosis and patient statements – some of which were stated by those patients for evidence supportive for benefit payments.
Dangerously inappropriate treatment continues to be given to IAPT patients – purely for the selfish goal of manufacturing income via a badly identified and minor aspect of the patient’s condition. This is done while utterly ignoring the primary, pressing and risky element of a patient’s serious difficulty.
IAPT have no incentive, desire or even knowledge to be able to treat the multitudes of common psychological traps that humans encounter. Instead, they dissect the aspect of the patient’s condition that suits them and identify it as the honey. IAPT have trashed decades of known, tried, tested and proven psychological approaches and safeguards. Rather than make people better, IAPT deny patients help. They will even tell patient’s, “if you’re going to kill yourself, don’t call us – call the Samaritans”. Patients repeatedly claim that they were expected to play along with a therapy that they had no confidence in.
If all of the above is not enough – how about this! Numerous operators of the IAPT model with their non-existent ‘care pathway’, their feeble therapies and heartless business manipulations, have been pressurising their patients (and their workforce) to distort data and patient reports in favour of their ‘business’. This amounts to financial fraud which by definition, generates a wealth of recorded research data which is not only without value, it is also very likely to inflict damage and great cost upon all future mental health provision influenced by IAPT reports.
Something is badly wrong. The vast majority of IAPT services are taken up by women – men represent just 10 to 20%. Yet female suicide is actually going up and male suicide – though greater in numbers, is actually reducing. Could this mean that IAPT treatment is actually so inappropriate that it contributes to higher suicide rates?
The police should be involved with the IAPT scandal. In the meantime sharing IAPT recorded data and reports is as potentially dangerous as injecting patients with cheap contaminated blood. Don’t do it.
3 November 2018 @ 23:35
I am not familiar with IAPT but I certainly believe you. I would just add that a significant proportion of records relating to physical health are of such poor quality as to be worse than useless, usually reflecting medical practice that is worse than useless. The reasons vary from incompetent trainees trying to give the impression that they know what they are doing, to deliberate malicious falsification of records by a senior consultant to cover up unprofessional behaviour and/or medical negligence. The indiscriminate sharing of all this junk without consent does harm in many ways, but among other things it places an intolerable burden on the patient who, when they see another doctor, then has to try to clear all the garbage out of the way before any sensible conversation can even begin. Data sharing without consent removes from patients the power to protect themselves from the malign influence of bad doctors (or therapists). There are of course many very good doctors in the NHS, but there are also a lot of the other kind. I have had the experience, in one field, of searching for seventeen years before I found the right help. Seventeen years of records in this field were totally worthless if not misleading. Had I believed any of them they would have done me harm beyond the harm simply from not having appropriate advice. The NHS wants to share this bundle of garbage with every doctor I might consult without my consent. The patient to whom these records relate does not exist.
4 November 2018 @ 08:15
My medical data is in a 5 inch thick manila file to keep the Russians and North Koreans hacking into it.
4 November 2018 @ 17:26
PLEASE tell me how you have managed to achieve that. I have been trying for five years with zero success and, believe me, I have explored every avenue I know of, even the Ministry of Justice. They passed my letter on to the DHSC, who advised me to consult my local Citizen’s Advice Bureau!! I had already long ago established that every part of the Health Service, including the DHSC are totally deaf to all complaints and objections – because they know they can get away with any outrage, or else they are being blackmailed by their NHS contract.
4 November 2018 @ 21:55
Only 5 inches, mine is at leasr 5 and a half !
4 November 2018 @ 07:31
If data is being shared without the persons consent then that would be a national disgrace
4 November 2018 @ 17:50
Of course data is being shared without the person’s consent; and of course it is a national disgrace. Will Smart, the NHS Chief Information Officer, is reliably reported as having said, in a speech he gave in London on 16 March 2018, that their aspiration was to have a complete, longitudinal, health and care record, across all care settings, for every one of the 55 million (?) patients in England within the next four years. He added that that “should be fairly simple to pull off”. I don’t think that leaves much room for dissent about anything. All hospitals have a statutory obligation to regularly submit SUS (Secondary Uses Service) data to NHS Digital for every episode of care and every patient that comes through their doors. Anyone who objects that they have opted out of secondary use of their data, will have their objection illegally overruled (that is in contravention of the GDPR). NHS Digital is selling our data to its customers on a daily basis, while disregarding opt outs if the customer wants a complete set of data, as the market price for this commodity is higher. The same data is being stored in research databases for use, in perpetuity, by any researcher with an approved project.
3 November 2018 @ 12:47
Everyone is “misinterpreting data protection law”, deliberately – in order to deceive patients into thinking that their objections can be legally overruled. The patient’s view is always left out of the story.
1 November 2018 @ 12:26
i think … the starting point would be to ensure that all referrals for MH go thru’ e-RS, that way:
1. a pathway would be instantiated and MH care activity could be assigned to it (keep it tidy)
2. this would aid measurement of key metrics e.g. RTT
3. a simple change to a PAS UI could allow pathways (UID is the PPID), BOTH PHYSICAL AND MENTAL, to be connected i.e. INTEGRATION
Shall I spec out the change to the UI ? It’s not difficult …
1 November 2018 @ 10:54
How to do it – yes indeed. Matt Hancock’s ‘drive towards interoperability’ has as much credence as the ‘drive to end all disease’ without some concrete plan. It would be useful if someone could define for me EXACTLY what ‘sharing information’ and ‘interoperability’ mean, with examples. In my mainframe days, the latter term could assume half a dozen forms, depending on the requirements, from real-time transactions to asynchronous file transfer, hence my question.
1 November 2018 @ 07:54
This report is bang on, but the big issue is how to “do it” ? The integration of care, physical and mental, wills not happen without integrating the care activity provided by integrated care teams and this will not happen efficiently without the care activity DATA being integrated. This needs a data model, I would share my data model, but this UI does not support that functionality, please get in touch. However, for all you academics out there here is a starter for 10 :- All care activity should be assigned to a PERSON pathway (a PERSON is a patient, a service user or someone being helped in the community, someone like U or I), these pathways can then be connected to each other using the concept of a care model. Just like people, health is complicated, does what I say make sense ? Get in touch, I would be happy to share my data model (and supporting concepts) with you for free !
4 November 2018 @ 18:42
Again Clive, ‘integration’, like interoperability, means nothing to me unless it is spelled out. ALL data can’t be integrated if it has no connecting data, just as you can’t integrate apples and oranges. There are just a few ‘entities’ here: patients, ailments, medication and medics. As well as databases (integrated or otherwise), there needs to be a system log of all medical proceedings, just like the equivalent in IT systems, for post-analysis when things go wrong. That would put the cat among the pigeons when miscreants get things badly wrong. Instead of being promoted (as they seem to be today), they can be dealt with according to their level of accountability. That word doesn’t seem to appear in the NHS, or any other public sector, dictionary.
It will take more than throwing ‘tons’ of technology at it (as Matt Hancock plans) but needs good process (ways of doing things) design aided by suitable technology and people trained in those processes. There is quite a bit of info on the internet about ‘process design in healthcare’ and in my book, this sort of design activity is NOT optional. ‘Ad hoc’ and ‘playing it by ear’ are not acceptable techniques where lives are concerned.
5 November 2018 @ 14:48
the connection should be the PERSON Pathway ID, converted from the UBRN, each time a person develops a condition then they should get an e-RS so that all the relevant care activity can be associated with the relevant pathway, sorting out the data and integrating the data, thanks
5 November 2018 @ 16:11
Sorry Clive, I have no idea what all the acronyms you quote mean. If they solve the interoperability between disparate NHS systems, shouldn’t someone tell Matt Hancock? I have to talk in generic terms as I am not ‘NHS systems literate’.
6 November 2018 @ 07:39
Terry,
Sorry, but I am technical (not clinical, not managerial, not admin. , not political), how about yourself ?
e-RS – electronic Referral Service (a national computer system which allows a referral to be made (for a person) electronically, the system issues a computer generated UBRN)
UBRN – Unique Booking Reference Number, once the person has chosen their (consultant led) provider team then a PERSON Pathway is started
PPID (or PP ID) – an identifier which uniquely identifies a PERSON Pathway (like the NHS Number identifies a unique PERSON {and their Health Journey})
RTT (duration) – Referral to Treatment, how long a person must wait on their pathway from referral to First Definitive Treatment (FDT) e.g. admission to hospital for a hip operation
MH – Mental Health
PAS – Patient Administration System, collects, validates and does some processing of the patients’ health DATA
UI – User Interface, the link between you and your mobile phone or other computer
UID – The Unique IDentifier for an entity (e.g. a bank sort code and account number
*************************************
or an NHS Number, or a PERSON Pathway ID)
*************************************
e-RS – electronic Referral Service (a national computer system which allows a referral to be made (for a person) electronically, the system issues a computer generated UBRN)
UBRN – Unique Booking Reference Number, once the person has chosen their (consultant led) provider team then a PERSON Pathway is started
PPID (or PP ID) – an identifier which uniquely identifies a PERSON Pathway (like the NHS Number identifies a unique PERSON {and their Health Journey})
RTT (duration) – Referral to Treatment, how long a person must wait on their pathway from referral to First Definitive Treatment (FDT) e.g. admission to hospital for a hip operation
MH – Mental Health
PAS – Patient Administration System, collects, validates and does some processing of the patients’ health DATA
UI – User Interface, the link between you and your mobile phone or other computer
UID – The Unique IDentifier for an entity (e.g. a bank sort code and account number
*************************************
or an NHS Number, or a PERSON Pathway ID)
*************************************
I am going to post the above on twitter as it may help other PEOPLE to manage their health.
6 November 2018 @ 08:36
Clive, I more technical than business but know about the latter, apolitical, dogma-free and interested in root cause analysis and solutions and not the blame game. I feel the NHS should do what the major classical composers did when unhappy with a work; scrap it and start again on revamping the processes and in the meantime try to link the exist morass of apps, if necessary, with something like APIs or MQ (message queuing) on a priority basis.
6 November 2018 @ 08:52
are you talking NHS or NHS IT ?
6 November 2018 @ 08:55
appologies, the last question was directed at Terry and to be specific, scrap the NHS or scrap NHS IT
5 November 2018 @ 17:54
Each time i develop a condition, either I control what is done with that information, or I cannot entrust it to the NHS. As long as the NHS thinks it can “sort out the data and integrate the data” they do not get the data, and I do not get healthcare. Hardly an ideal outcome, either for me or for population health management. As Humpty Dumpty said to Alice, “The only question is, which is master – that’s all”.
6 November 2018 @ 09:40
Terry, Not possible to scrap NHS or NHS IT … why ? Bit like going to the moon, too expensive to use public money to relaunch ! (even tho’ it would be so much easier and safer and more excellent the second time;) kind regards, Clive (my lap top is ****** so need to move into the cloud)
6 November 2018 @ 09:51
NHS IT is an appendix to NHS so if NHS goes, NHS IT goes with it.
6 November 2018 @ 15:38
not entirely sure i know what you mean but i know i agree with you 🙂
31 October 2018 @ 14:13
Great news!
Still my GP Practice doesn’t even allow patient access to SystmOnline Patient Record – it’s greyed out!