Angharad Dalton is reminded, through personal experience, of the absolute need to improve the patient experience within the NHS.
We, the IWA, are working on developing a new health project, Helping Patients Change the NHS. This proposes to put patients in control of the design and development of solutions to issues they have identified. Last week I got a sharp reminder of the prevalence of the problems our project wants to address; that of access to patient records / notes, and information about delays and hold-ups on the day of an appointment. These issues were identified by people who took part in our Let’s talk cancer project last year, and when a major public consultation exercise concludes that some of the most difficult issues in healthcare settings for people in grave situations are that of communication and information provision, you know that the problems run deep. A key reason behind wanting to take these issues further now is because it struck us as interesting/awful that they don’t only affect people accessing cancer services, but everyone accessing health services in Wales.
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Patient Stories Series This week on Click on Wales we are running a series of patient posts in relation to our new crowdfunding campaign for our Helping Patients Change the NHS project. |
Patient Number 9: the experience
Unable to get a GP appointment before mid-September, I attended a walk-in service at a Cardiff hospital, which is where things got interesting from a project point of view.
On arrival I took a number and a seat in a waiting area. I had no idea how long I would wait until I was seen, and there was nothing telling me which number was up next. This made me a bit scared to leave to get a coffee or use the bathroom in case I missed my turn. I had no phone signal there, and it took an hour of trying to move about surreptitiously before I managed to find a spot in the room where I could use the free wifi. Eventually, I got to see a nurse, who was lovely, but since she couldn’t access my medical record to check the details of a previous prescription, she directed me towards a doctor, meaning I had to return to the waiting area for another indefinite amount of time. Having racked up a total of 2.5hrs at the hospital, I went to speak to the receptionist to explain that I had a dental appointment looming, and I was concerned I’d have to make a choice between the two appointments – was there anything they could tell me about whether I would be seen before 12:00?? They were nice enough, but were unable to help since they too were hostage to a system that simply can’t provide timely access to key information and data. Staff and patients equally are contending with difficulties thrown up by archaic, anachronistic and disconnected NHS systems. It makes you wonder who exactly is being served well by the current set-up?
Duckspeak
During Let’s talk cancer, one of our cancer specialists explained their idea that the NHS has been mis-sold, and suddenly a lot of things made sense to me. The NHS is a brand, a concept, which has been applied to a vast range of public services that fall under the ‘health’ umbrella, yet which may not have any formal working/collaborative relationship in any way you might expect; be it disciplinary or geographic. It’s like some kind of Orwellian ‘duckspeak’ (a Newspeak term meaning to speak without thinking). The notion of the NHS as an entity gives rise to our sense of expectation of a service that knows who we are, and how to meet our needs. The NHS though is not a seamlessly unified national service, it is an un-networked network in an age characterised by networks… And to borrow from Orwell again, this is ungood.
Not wanting to pre-empt any solutions that patients might design for these issues as part of our co-production project, it does strike me that digital affords the NHS the opportunity to tackle these issues, and has long-since done so. The internet, itself a highly complex network, is surely our best bet for networking this un-networked NHS? Yet countless initiatives and efforts to deliver have fallen short. The LIMS project is a recent example of the way attempts to join-up services spin off-kilter and have failed to deliver fully on the original vision. Oh, and don’t ask about efforts to tackle notice of delays. These don’t specifically exist, but if we’re lucky, they might be addressed as an indirect benefit of other quality improvement efforts…
The good crowd
Our project seeks to take an entirely different approach to making change happen. It is time to bring in patients and partners from the world of commerce around the table with health boards to design and create a system on the ground – Helping Patients Change the NHS will do this. It is a for patients by patients project, rather than a project that is ‘for’ the NHS. Last week reinforced my absolute belief that our project is necessary and important. We can’t do it without your help though. Please help make this project a reality by supporting our crowdfunding campaign with a small donation. We are aiming to raise £2500 via public donations – as we believe this is a powerful way to demonstrate the weight of public concern behind these issues. We think these are issues worth investing in personally, and we hope you can help us make change happen through helping us to raise the funds over the coming weeks to get the project started.
Angharad. Very sorry to hear that you needed to see a doctor. I hope that you are OK and that the NHS doctors sorted out the problem (eventually!). One’s health is indeed the most important thing.
I will donate (money) to your project as I did (several suggestions) to your ‘Let’s talk about cancer’ initiative.
Having experienced the NHS at every level as a patient, both personally and by members of my family, I have to say that it is totally admirable in very many respects. However, you are right that some things need urgent attention.
It is not about funding, although that needs to be sustained and increased if possible, it is the ‘institutional’ organisation that needs improvement. The NHS is one of the largest ‘institutions’ apart from the ‘military’ and to use a military analogy the ‘lines of communication’ between the foot soldiers (staff) and the top brass (doctors and management) have (sometimes) not kept up with the new advances provided by computerisation and er…internet. It seems that they have spent millions on complex IT systems which many staff haven’t had training for and wouldn’t know how to use anyway as it is not in their skillset and why should it be? It is easier and quicker to shout ‘next’ down the corridor than to peer myopically at a computer screen which may have crashed anyway (blue screen of death).
I have personal experience of doctors spending more precious appointment time looking at computer terminals trying to find my details than examining my condition or listening to what I had to say.
There is also a vast data/record legacy on paper. Most of this has never been computerised and never will be. The insurance industry often doesn’t accept ‘digital records’ as proof of condition so everything still has to be signed off manually and stored in brown folders in file rooms fetched by humans. This is a data input backlog that will take at least two generations to clear, maybe never. Meanwhile, computer/data storage technology is advancing so quickly that records kept on ‘old systems’ become ‘incompatible’ or inaccessible. Doctors and staff have to become whizz kids just to keep up! This is yet another opportunity for the IT industry to milk the NHS (and us) for even more money.
To be fair the NHS is probably fully aware of the perennial issues above and those that you will raise in your study and will have a response ready and waiting for your report but no matter they should still be raised and complained about regularly. However, they are not the enemy!