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’s bright, the future’s 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.
£1m dedicated to MND research through 7 in 7 Challenge
A £1million fund has been created to lead new research into potential treatments for Motor Neurone Disease (MND) through the efforts of an iconic challenge by Kevin Sinfeld.
Kevin, director of rugby at Leeds Rhinos, raised over £2million through his 7 in 7 Challenge, inspired by his former team-mate and close friend Rob Burrow.
Rhinos legend Rob was diagnosed with MND in December 2019, and Kevin completed seven marathons in as many days to help boost badly-needed research into the condition.
Now, with £500,000 of the money raised through the 7 in 7 Challenge ring fenced for research, that sum has been matched by medical research charity LifeArc.
The move has created a £1million joint fund established by the MND Association and LifeArc, which will support research projects focused on developing new therapies or repurposing drugs already approved for use for other conditions.
“This is fantastic news and an amazing contribution from LifeArc,” says Kevin.
“When we set out to complete the 7 in 7 Challenge we hoped to raise awareness and funds to support the MND community but it is so wonderful to see the inspiration it has given people and organisations, like LifeArc, so they too can support the need for more research.
“Our hope, like that of everyone affected by this brutal disease including Rob, is that this money will make a real difference and help find the breakthrough we all desperately want.”
Researchers are now able to apply for a share of the funding, with the criteria that they will be expected to conclude their project within three years and be target driving with set milestones and a credible delivery plan – including a clear route to reach MND patients.
Dr Brian Dickie, director of research development at the MND Association says: “We are so grateful to LifeArc for this generous contribution and are looking forward to working with them to identify projects which have a real chance of making a difference to our community in the coming years.”
Melanie Lee, LifeArc’s chief executive, emphasised that the focus of the new funding is on boosting research around potential treatment options based on the latest understanding of the disease.
“The ambition around stimulating the search for new treatments fits with LifeArc’s approach over the last 25 years to translate early science into health care treatments or diagnostics that can transform patients’ lives,” she says.
“Our partnership with the MND Association is the latest in a series of strategic partnerships that maximise LifeArc’s expertise in translating strong discoveries from the lab into benefitting patients with conditions with few or no effective treatment options.”
What causes a stroke?
Over 100,000 people in the UK suffer a stroke each year, with there currently being around 1.2 million survivors living in the country.
Many people note that despite how common strokes are they remain unaware of what the actual causes of a stroke are.
Depending on which of the two types develops, causes and outcomes can differ.
What both have in common is they restrict blood flow to the brain. This leads to a reduction in the brain’s oxygen levels, which can cause tissue damage.
Here, NR Times breaks down why a stroke may occur and what risk factors there are behind each different type.
What are the different types of stroke?
There are two main types of strokes: ischaemic and hemorrhagic.
Ischemic strokes make up nearly 90 percent of all cases and they materialise when an artery which provides blood and oxygen to the brain becomes blocked.
A hemorrhagic stroke is much less common, but happens when an artery leading to the brain bursts and starts to leak blood around or in the brain.
Causes of an ischaemic stroke
The brain is only able to function properly when its arteries supply it with oxygen-rich blood, meaning any blockages can cause lasting damage.
With a lack of blood flow, the brain is unable to make enough energy to work. If this consists for more than a few minutes, brain cells will begin to die.
This is exactly what happens in an ischaemic stroke, but there are a range of reasons as to why these blockages develop.
One of the main causes is when the arteries around the head narrow, which makes it harder for the blood to pass through.
This can also lead to something called atherosclerosis, which is where substances in the blood (such as fat or cholesterol) stick to the sides of the arteries.
Blood can build up on these deposits, causing a further increase in pressure and a reduction to the brain’s oxygen supply.
There are a number of reasons for these blockages, with the most common ones being around a person’s lifestyle.
For example, smoking can increase the risk of a stroke by up to 50 percent.
This is because nicotine not only narrows the arteries, but it also makes the heart beat faster, causing an increase in blood pressure.
Excessive alcohol intake, obesity and high cholesterol levels are also all listed as major risk factors when it comes to ischaemic strokes.
Problems with the arteries around the heart can also lead to an ischaemic stroke.
Irregular heartbeats, heart attacks and other irregularities around this area can again limit the blood’s oxygen levels.
Causes of a hemorrhagic stroke
Hemorrhagic strokes are most common in people ages 45 to 70, but they affect a lot more younger people than an ischaemic stroke.
These are caused after the arteries around the brain burst and cause bleeding.
Depending on where the artery is can affect the outcome of the hemorrhagic stroke.
If the bleeding occurs within the brain, blood shooting out at high pressure can kill some cells.
Bleeding on the surface increases the pressure in the protective layer between the brain and the skull, potentially causing more cell loss.
This bleeding is normally caused by chronically high blood pressure. In many cases, the increased pressure can cause the arteries to expand and weaken, meaning a split in them is more likely to take place.
A rarer cause of hemorrhagic stroke is where the blood vessels around the brain are connected abnormally, causing further stress on the brain. These are congenital (present at birth) but the reason for their occurrence is currently unknown.
Again, the best way to reduce the risk of an hemorrhagic stroke is to make healthy lifestyle choices.
NHS pilots video service for epilepsy diagnoses
A new clinical video service which supports epilepsy diagnoses and management in the era of coronavirus and beyond has been launched in the UK.
vCreate Neuro allows registered patients and carers to share smartphone-recorded videos of potential seizures or unknown movements with their clinical team via a secure, NHS-trusted system.
The data and footage act as a visual aid to assist clinical teams with rapid precision diagnostics, creating a digitised clinical pathway that minimises the need for face-to-face clinic appointments and invasive tests.
The system is currently being piloted across Scotland and, following its initial success, across England including Great Ormond Street Hospital, Evelina London and Sheffield Children’s Hospital.
The system is available to families who are concerned that they, their child or loved one may be experiencing seizures or unexplained episodes including epilepsy.
Since May 2020, more than 2,000 families have shared over 5,000 videos with their clinical teams across the platform.
Dean MacLeod was referred to the service when her seven-year-old daughter, Olivia, began having unknown movements in May 2020.
Dean uploaded videos of Olivia during these episodes as Olivia’s seizures grew more frequent.
The videos were reviewed by Paediatric Neurology professionals at the Royal Hospital for Children, Glasgow, and, supported with telephone appointments, Olivia was diagnosed with a form of epilepsy and quickly started on treatment.
Speaking about her experience, Dean said: “I’ve found vCreate to be invaluable in Olivia’s journey since she started having seizures last summer.
“We live in a remote location on the Isle of Lewis, Scotland, and we have a very limited paediatric service on the Island. The service has made it easy to access the specialist clinical knowledge needed by sending recordings of various seizure events to the Paediatric Neurology team at Glasgow.
“Since the diagnosis, I have kept in regular contact with the clinical team through the platform, sending videos and typically receiving advice from a Consultant within 24 hours which is fantastic. Between the vCreate service and telephone discussions, our family have not needed to have face-to-face consultations which has been hugely beneficial during the pandemic.”
Professor. Sameer Zuberi, consultant paediatric neurologist at the Royal Hospital for Children, Glasgow, said: “vCreate Neuro has transformed how we use carer-recorded video in our service. We are diagnosing epilepsy more rapidly, preventing misdiagnosis and saving unnecessary investigations. Families feel in more control and better connected to the service.
During the Covid-19 pandemic, many people experiencing seizures and seizure-like episodes, including children, have been unable to see a clinician.
Create Neuro aims to help by empowering patients to use asynchronous video technology for self-management, reducing the need for physical appointments.
Founder Ben Moore said: “We’re passionate about family-forward care, and worked closely with clinical teams, patients and carers to develop the vCreate Neuro service.
“The system aims to improve patient care, reduce the number of clinic investigations – and resulting costs to the NHS – and digitise the patient pathway. We want families to be in control of their healthcare journey and have a direct link to their clinical team despite the pandemic restrictions.”
The vCreate platform has been independently assessed and approved by Information Governance teams in over 100 UK NHS Trusts.
Within the platform, a clinical database is available as a learning resource for clinicians to study seizure types, events, and other symptoms.
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