Brian O’Shea, Continuing Healthcare Advisor at the Spinal Injuries Association
As a service user and patient advocate, I believe it’s important to always consider the patient perspective of going through the NHS Continuing Healthcare (CHC) process. I think it’s important to recognise that when people encounter the CHC or local authority assessment process, it is more often than not the first time that they’ve engaged with the health and social care system.
This usually results in an overwhelming experience for patients, or their carers, as they have so many questions about the process. It can therefore appear to CCG or CHC advisors that patient questions don’t really arise in a logical flow or sequence. They will often ask questions as they emerge in their minds, for example, “How does this thing work and how can I make sure my voice is heard? What’s happened so far in the process? What happens next?” However, the most frequently asked question about the process is, “Who can I speak to?”
It is really important to think of this experience not only from the individual patient’s perspective but also from anyone who is working with them to get through it, whether that is an advocacy organisation such as SIA or simply an interested relative.
Quite often when a patient or their relative contacts us, we start to ask them what we think are simple questions: Where are you? Have you had a check list done? Have you had a referral made? However, as it is often their first experience dealing with the health and social care system, they just don’t know the answers.
Using a patient portal
Previous NHS CHC improvement initiatives have focused on answering this question by allocating a case worker to take individuals through the end-to-end NHS CHC process. However, we know that this falls down because the individuals managing the process leave the NHS organisation handling the individual’s application, or there is a change in the contact details of the CCG etc. And there are many more factors and variables that can disrupt the communications between the individual and the CCG, leaving the individual in the maze or even worse, just in the void.
And so, I think digitisation in this area of healthcare delivery is tremendously exciting. I think that, through the trials of the last year, we have seen how empowering the move over to digitisation can be across the whole of the health and social care sector – when it is done properly.
In this spirit I see a patient portal as a potential solution to many of the questions the CHC process brings up for both patients and CCGs. We once asked as an industry, “How do you address the issue of having a dedicated individual to take the patient through the assessment and care plan process from end-to-end?” Well, the answer may just be that you don’t actually need an individual to take the patient through the process, maybe that can be achieved by a digital platform.
There is also a growing awareness amongst patients of the amount of personal information the NHS holds. I think that one of the advantages of the patient portal on the digital platform, particularly demonstrated in the Digital CHC by IEG4, is that the CCG can make the data more transparent to patients and families. Sharing the assessment information and the discussions from the MDT meeting builds trust in the process and ensures that patients and families are at the heart of the CHC decisions.
However, having a patient portal is not necessarily throwing open the doors and having absolutely no control of the information between the patient and the heart of the NHS. It is more about understanding the information that an individual needs to generate trust in the NHS CHC assessment process. As advocates we recognise that, for some patients, if you gave them access to everything it could be just as overwhelming as not giving access to any information. So, it is important for the CCG to build flexibility into their digital platform and strike the appropriate balance for each individual patient.
An additional advantage with a digital platform, is that you don’t have to wait for 9-5 office hours to get an answer to your questions, you can access the information yourself at a time to suit you. The platform can answer the questions of who has already been involved and who is going to be involved, what the next steps are, and it can also keep track of what’s already been done. No chasing telephone calls taking up time of health and care professionals and an ability for patients and family members to take control.
The Future is Bright. The Future is Digital!
The path to the digitisation of healthcare services has not been straight forward, and there is still some work to be done in ensuring that safety sits atop the agendas of CCGs when it comes to its adoption, however seeing how platforms like IEG4 take steps to improve this is encouraging.
Both as a patient and as a patient advocate, I cannot tell you how excited I am about the move to digitisation of Continuing Healthcare. I honestly think it has the potential to be revolutionary. I think that when used appropriately by CCGs it could be a revolutionary step forward in the quality of decisions made, in the amount of time that it takes to make decisions and it has the potential to be revolutionary for the individual patient experience of the NHS CHC assessment process.
I would really encourage CCGs and local authorities not to see it as a threat. To me it is just such a great opportunity and I think it is really pivotal in changing how we engage with Continuing Healthcare.