>>Donna Cluer: Good morning. My name is Donna Cluer, and I'm the neurology manager
at Plymouth Hospital within NHS Trust, which is a large acute teaching hospital and neuroscience
centre on the border between Devon and Cornwall. We're here today to tell you about our proposal
to create a neurological partnership. It's actually not neurosciences partnership which
it describes in the information. It is a neurological partnership involving the five acute trusts
in the southwest peninsula, our voluntary sector partners, and where appropriate industry
as well.
I'm here today with some of those partners. Let's start and introduce them.
This is Dr. Martin Sadler who is one of our consultant neurologists in Plymouth. Dr. Rebecca
Aylward, who is a consultant neurologist in South Devon Healthcare Foundation Trust in
Torbay, and Karen Pearce who is the Director of Care for the Motor Neurone Disease Association.
The southwest peninsula of Devon and Cornwall has a population of 1.7 million. 21% live
in rural communities and that's compared with 5% nationally. As part of the peninsula what
we also include is the Cornwall and Isles of Scilly, so obviously a very desperate group
of patients. The Peninsula covers 4,000 square miles and has about three known motorways
so getting around the peninsula can be quite problematic and getting into it and out of
it as well.
Neurological long term conditions are characterised by deteriorating mobility and the geography
of the peninsula can make it particularly difficult for these patients to access specialist
care. The cost of neurological services is growing faster than almost any other. We believe
that our proposal can deliver innovative and new ways of working that can make an evidence
based, patient focused, and equitable service financially sustainable. I want to hand you
over now to Martin who is going to tell you more about the partnership, how it's going
to operate, and what the benefit will be for our patients. Thank you.
>>Martin Sadler: I am Martin Sadler, a clinical neurologist. What characterises our proposal
is that it has been developed from the bottom up by clinicians who care for patients and
those patient groups. We have one neurologist per 100,000 of the population spread over
a large geographical area. We're all generalists with a specialist interest, and collectively
in the peninsula we have high quality specialist expertise in all areas of neurology, but we
don't have it at each site.
As individual clinicians, we all want all of our patients wherever they are in the peninsula
to have timely access to a specialist's opinion and for us to be able to provide a consistent,
high quality service. Now, this is not a problem unique to neurology, and our approach can
be scaled and reproduced anywhere that there are clinicians thinly spread across a large
geographical region. Furthermore, each of our clinicians wanted to maintain their relationship
with their patients and their clinical autonomy, but is keen to be working in collaboration
to ensure better patient care, and with these things in mind, we have developed the Peninsula
Neurological Partnership.
We've identified several long term conditions in neurology that may be suitable for a networked
management approach. These include multiple sclerosis, epilepsy, Parkinson's disease,
and headache, and we've partially developed our network approach [Inaudible], and Rebecca
can answer questions on that, time allowing. And we've already fully developed our network
approach for our pilot and template illness of motor neurone disease working in partnership
with the Motor Neurone Disease Association.
So, how will it work? Well, each long term condition will have a condition specific group
to decide upon common standards, care pathways and governance, and the membership of this
group would depend upon the condition. And now Karen will illustrate how this was developed
for patients with motor neurone disease.
>>Karen Pearce: Good afternoon everyone. In 2008 people with motor neurone disease and
their carers told us that understanding their needs across Devon and Cornwall was poor.
The southwest peninsula approached us and we supported the funding of a service that
has made a significant impact on those with a rapidly progressing neurological disease
that is always fatal. The service has a steering group which includes neurologists, palliative
medicine consultants, nurses, therapists, the Motor Neurone Disease Association, but
most importantly patients and carers as representatives, the real experts of the impact of the disease
on them. Success has been driven through the creation of a number of multidisciplinary
teams whose membership reflects the specific needs of people with motor neurone disease
such respiratory care and end of life care.
Most importantly, those NDTs have developed pathways such as enteral feeding, and also
new pathways that have been developed around very challenging areas such as withdrawal
of non-invasive ventilation. Crucially this is driven through a single point of contact,
a specialist nurse coordinator. She, amongst other things, supports the education of professionals
across the region and is the first point of contact for patients and carers following
a very devastating diagnosis. The success of this model has resulted in continuous improvement.
The latest is telephone clinics. This means that those finding travel difficult across
a very dispersed geography can phone in. They don't have to visit a clinic unless it's absolutely
essential.
>>Martin Sadler: Thank you. And so what would we have achieved in the next 12 months? Well,
we would have set up an umbrella steering group. We would have set up the remaining
condition specific groups and we've already identified clinical leads for each of these.
We would have established multidisciplinary teams where needed, and we've already established
three of these in Plymouth. We would have performed baseline audits of the current service
and perform a GAP analysis at each centre, and we'd also develop some patient monitoring
of their condition. And we've already created apps to assess the monitoring aspects of epilepsy
and that is nearly complete for the similar thing in Parkinson's disease. The epilepsy
app was written in Plymouth, but was based upon work performed in Cornwall, another illustration
of our collaborative approach.
What would we expect to get from being a Vanguard site and support from the Vanguard team? Well,
we'd hope to gain from learning with others so that we would not be duplicating effort.
We'd expect an increase in the pace of change, and we'd hope that being a Vanguard site would
act as a lever for us to be able to use [Inaudible] to help us get engagements from each centre
with any of the network proposals.
And so in conclusion, we believe that the strength of our proposal lies in its simplicity
and specificity. We know that one size doesn't fit all and our proposal works with specific
patient groups with specific needs using specific partnerships to find specific solutions. Our
clinical network and umbrella arrangement allow learning and innovation to bev [Inaudible]
>>Unidentified Male: Sorry. I'm really sorry, going to have to cut you off there. Really
sorry. The whole idea is [Inaudible]
>>Martin Sadler: Two lines to go.
>>Unidentified Male: Sorry.
>>Unidentified Male: If we can have questions for the [Inaudible] from the [Inaudible] please.
Yes, table number 10 please.
>>Unidentified Female: Thank you. We can only get through the last
two lines. So, very nice model. So, the same sort of question in reverse. Given that you've
said you're dealing with devastating diagnoses with these really difficult long term conditions,
do you have plans for the incorporation of mental health into your NDT psychological
support to actually support the entire person rather than just the system specific problem?
>>Unidentified Male: Do you want to deal with that please?
>>Karen Pearce: I can deal with that from a Motor Neurone Disease Association point
of view, but also link it into the rest of the network too.
And certainly within Plymouth there is neuropsychology support for people with neurological illness,
and we're learning that there is more cognitive impairment and frontotemporal [Inaudible]
dementia in certain diseases than we've ever understood before. So, crucially important
to bring those specific areas, but as we mentioned within the multidisciplinary teams, they have
representatives for a specific [Inaudible] to the disease group so you would invite the
relevant clinicians to be in those groups in order to support those different areas.
Rebecca.
>>Rebecca Aylward: Yes, just to comment. I'm lead on the epilepsy network, and of course
epilepsy has a lot of mental health issues around it, not only for the patients themselves,
but often in dealing with the condition with the family. Epilepsy is not a condition that
is rapidly progressive and leads to death, but is extremely difficult to predict so people
need crisis management. And a lot of what they need is the kind of mental healthcare
that we heard about with cafes and supporting the community. And one of the things we can
do by having these very specific networks is that we have on [Inaudible] in the network
people who are already often dealing with these problems and we just bring them into
the network and therefore we can support each other.
And what we've heard, we have a lot of learning disability people in our epilepsy group and
also people from mental health more generally, and what we find is not only do the patients
respond by saying that actually for the first time people are seeing them and noticing them
out there, but also the staff, who've often worked in isolation in this very widely dispersed
peninsula and sometimes on the island, are saying, this wonderful, for the first time
we feel that we belong to an organisation, we've got someone to talk to.
>>Unidentified Male: Thank you. Question [Inaudible] table number nine, please.
>>Unidentified Male: Thanks very much [Inaudible]. I'm just speaking on the learning that might
be for other systems [Inaudible] for everyone else. You talked about telephone clinics and
I'm sure there's to be a range of other approaches to reduced travel or deal with regional services.
How do we get the learning from that out both the financial models and the best way to do
it? How do we get that out of your system into other systems?
>>Karen Pearce: I mean to us that's one of the advantages of being part of a Vanguard
program. We are expecting that the learning from each of the condition specific groups
would be spread across the different sites. It would then be spread between conditions
through the umbrella organisation that we have, but then we would hope that as part
of being part of the Vanguard program, that means that we can link in with other similar
services. Certain we consider anything that we're doing is transferable to other long
term conditions. And so we would hope that that's the benefit to other hospitals, other
services, of us being part of the Vanguard.
>>Unidentified Male: Thank you. Further questions? Here, table number 14.
>>Unidentified Male: Jonah [Inaudible], can I just ask [Inaudible] sorry. My name is Trevor
Fernandez, patient the east of England. Can I just ask you about the app? I understand
that that was developed in-house and you've [Inaudible] your Trust has footed the bill
for that. Will that app be available up and down the country to others?
>>Karen Pearce: Yes, the apps that we've have already [Inaudible] well, we've had [Inaudible]
actually we've developed two specific apps. One's the dementia app and that's called Ace
Mobile, and the other app that's just been released is called EpSMon, which is Epilepsy
Self-Monitoring, and that's been developed by a team called Neurocore [Inaudible], which
is a couple of neuro phycologists who've created a small company that's dealing with neurological
and cognitive research. That's basically what Neurocore comes from. And so in their spare
time really what they've been looking at is how can we develop ways in which patients
can self-monitor. The EpSMon app I know can. If you google it you'll find it on Google.
And the next one that we want to now apply the same technology and the same learning
to is the PD self-monitoring app as well. So, yes, it will be something definitely we'd
want to make available generally as soon as it gets rolled out.
>>Unidentified Male: Thank you very much. I've been told that's time so sorry. Apologies,
no more questions left. So, can I have a big thank you for the neuro scientists then for
the southwest?