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Contents
Executive Summary ............................................................................................. 3
Background ......................................................................................................... 5
About the Humber Acute Services Review ................................................................................................ 5
Specialty Reviews ...................................................................................................................................... 5
Methodology ....................................................................................................... 7
What was the format of the events? ........................................................................................................ 8
Where did the events take place? ............................................................................................................. 9
How were participants recruited? ........................................................................................................... 10
Who took part? ....................................................................................................................................... 10
Feedback on Individual Specialties .................................................................... 11
Cardiology ................................................................................................................................................ 13
Complex Rehabilitation ........................................................................................................................... 17
Critical Care ............................................................................................................................................. 19
Neurology ................................................................................................................................................ 22
Stroke ...................................................................................................................................................... 27
Feedback on Decision-making Criteria ............................................................... 31
Background .............................................................................................................................................. 31
Decision-making criteria .......................................................................................................................... 31
Feedback on the decision-making criteria .............................................................................................. 32
Decision-making criteria (refreshed) ....................................................................................................... 33
Key Themes and Next Steps ............................................................................... 34
Appendix 1 – typical agenda .............................................................................. 36
Appendix 2 – delegate pack ............................................................................... 37
3
Executive Summary
This report summarises the key findings from a series of patient focus group events carried out
to support the Humber Acute Services Review. The Humber Acute Services Review is a
collaborative review of acute hospital services across the five main hospital sites in the Humber
area – Diana Princess of Wales Hospital in Grimsby; Scunthorpe General Hospital; Goole and
District Hospital; Hull Royal Infirmary; and Castle Hill Hospital.
The events sought to gather the views and perspectives of people have used services in the
clinical specialities that have been the focus on the review since September 2018, including their
families and carers. The events were held in various locations across the Humber area,
specifically in Grimsby, Willerby, Goole, Hull and Scunthorpe. In addition, the team attended
three MS Society support groups to conduct further engagement to support the neurology
specialty review.
In addition, the Humber, Coast and Vale Health and Care Partnership is developing an ongoing
programme of engagement with people affected by cancer, their relatives and carers. This work
will be undertaken through the Cancer Alliance, which is the Partnership’s existing collaborative
programme for cancer.
A broad range of diverse feedback was provided by the participants at the events. A number of
key opportunities were identified by participants for developing and improving services in the
future. These can be summarised as follows:
Develop and support the workforce
Participants highlighted a number of opportunities to develop and make best use of the
workforce within our acute hospitals. These included: offering group appointments and ‘one-
stop shops’ to make best use of clinicians’ time; improving networking and cross-site working;
and providing more training to patients and carers to enable them to support themselves and
their loved ones better and help avoid crisis situations.
Give patients more information, knowledge and control
A common theme amongst participants was that they wanted more information about what
was happening in their care, how long they would have to wait and what to expect next in their
treatment. Participants sought more information about how to look after themselves and what
to do when they had worries or concerns.
Make better use of technology
Participants were keen to see that hospitals are making the most of technological innovations to
improve services and make the most of scare resources (especially workforce). Technological
solutions were put forward by participants as a way to overcome access challenges and
disparities of service between different areas.
4
Support patients to improve their wider wellbeing
In almost all groups, participants recognised the benefits of getting to know other people who
have had similar experiences. It is particularly important to those with long-term conditions,
progressive diseases and/or other disabilities to have access to wider services that can improve
their overall wellbeing that are not directly linked to the disease that they are being treated for.
Improve access to and equity of service
Travel and access issues were raised by many (though not all) participants. Many participants
recognised the need to travel, particularly for more specialist treatment, but were concerned
that this might make accessing treatment more difficult.
As proposals are developed for the future of services in the five specialties covered in this
report, these opportunities and suggestions should be taken into consideration wherever
possible.
5
Background
About the Humber Acute Services Review
Across the Humber area and beyond, local health and care organisations are working in
partnership to improve services for local people. We are working to find new ways of improving
the health and wellbeing of local people through transforming care and support in our
communities.
As part of this work, we are looking at how to provide the best possible hospital services for the
people of the Humber area and make the best use of the money, staff and buildings that are
available to us. This may include delivering some aspects of care outside of hospital altogether
to better meet the needs of local people.
As a group of health and care organisations we are working together to conduct a review of
acute hospital services across the five acute hospital sites in the Humber area, which are:
Diana Princess of Wales Hospital, Grimsby
Scunthorpe General Hospital
Goole and District Hospital
Hull Royal Infirmary
Castle Hill Hospital
The review will look at how best to organise the acute hospital services that are currently being
provided on the five hospital sites. The input of healthcare professionals, patients and the
public in the region is vitally important to the success of the review.
You can find out more about the review and keep up to date on its progress on our website:
www.humbercoastandvale.org.uk/humberacutereview
Specialty Reviews
Since late September 2018, the Humber Acute Services Review programme has focused on
reviewing six clinical specialties, using a clinically-led design approach.
The six specialties are:
cardiology
complex rehabilitation
critical care
neurology
stroke
haematology/oncology
6
The clinical design process has involved bringing together doctors, nurses and other clinical
colleagues with commissioners and other key stakeholders to generate ideas about the best
possible ways to deliver services for their particular service area.
To support the clinical design process, a number of focus group discussions with current and
recent patients, their families, friends and carers, were undertaken to ensure the perspectives
of those who use the services are taken into account in the clinical design work. The themes and
feedback gathered through the focus group discussions have been shared with the clinical teams
considering the future of their services.
7
Methodology
The purpose of this engagement was to hear from recent and current patients, their families
and carers, who have used the services that are currently being reviewed. A series of
deliberative events were held where information about the Humber Acute Services Review was
shared with patients and discussions took place regarding how services could be improved in
the future.
The deliberative events covered five out of the six specialties that where clinical service reviews
are taking place (October 2018 to April 2019), which are:
cardiology
complex rehabilitation
critical care
neurology
stroke
The sixth service area where a specialty review has been initiated is haematology/oncology. At
the time this programme of engagement was undertaken, the specialty review for oncology was
still in the early planning stages and therefore it was not possible to incorporate the
engagement within the same programme. Additionally, the Partnership is developing an
ongoing programme of engagement with people affected by cancer, their relatives and carers,
through the Humber, Coast and Vale Cancer Alliance. In order to ensure a joined-up approach to
transformation in cancer services and engagement with the people who use cancer services,
engagement in relation to the oncology specialty review will be undertaken through the Cancer
Alliance.
8
What was the format of the events?
Each of the involvement events followed a similar format, with slight adaptations made based
on learning and feedback from earlier events.
The format included:
An overview of the Humber Acute Services Review
Presentations from lead clinicians explaining the opportunities and challenges in their
service
Facilitated group discussions following a SWOT analysis (strengths, weaknesses,
opportunities and threats) approach
Facilitated discussion on the decision-making criteria used within the review.
On some occasions, due to last-minute
staffing issues in the hospitals, the clinical
input was provided remotely, either via
live video link to the venue or through a
pre-recorded video.
Participants were encouraged to share,
from their experience, what is working
well and what is not working well in
current hospital services in the Humber
area. They were challenged to come up
with suggestions for how care could be
improved for patients in the future as well
as how to address some of the current
challenges within the services, such as
workforce shortages and performance
issues.
9
Where did the events take place?
In order to enable a range of patients, carers,
families and friends to contribute, a number of
events were planned across the Humber
area, close to the five existing hospital sites.
The sessions were organised to take place on
various different dates and times covering
the different specialty areas.
Where patients had to travel to another area
to attend, local CCGs supported this by
covering travel expenses and/or organising
transport if necessary.
In addition, the team were invited to attend
three MS Society support groups to conduct
further engagement to support the neurology specialty review.
Date Time Location Specialties Covered
Monday 28th
January
10am to 12noon The Pelham Suite, Grimsby Cardiology
Critical Care
Tuesday 29th
January
10am to 12noon The Mercure Hotel,
Willerby
Cardiology
Critical Care
Friday 15th
February
2-4pm The Courtyard,
Goole
Stroke
Neurology
Complex Rehab
Wednesday 6th
March
12noon to 2pm Hull Truck Theatre,
Hull
Stroke
Neurology
Complex Rehab
Thursday 7th
March
2-4pm Scunthorpe United,
Scunthorpe
Stroke
Neurology
Date Time Location Specialties Covered
Monday 18th
March
11am to 12noon Scunthorpe MS support
group
Neurology
Tuesday 26th
March
10am to 12noon Grimsby and Cleethorpes
MS support group
Neurology
Tuesday 26th
March
10am to 11.30am Hull and East Riding MS
support group
Neurology
10
How were participants recruited?
Participants were invited to attend the involvement events by sending invitations with
information about the events to a range of support groups and local voluntary sector
organisations (e.g. British Heart Foundation, Castle Hill Cardiac Support Group, Headway
Humber, the Stroke Association and many others). In addition, the events were advertised in the
outpatient areas of local hospitals, via local media, social media and other existing patient
involvement groups and networks.
Who took part?
Over the course of the five events, a total of 70 people attended and took part in the focus
group discussions (not including organisers, clinicians and facilitators).
In addition, 49 people took part in focus group discussions hosted by the MS Society at their
meetings in Grimsby, Scunthorpe and Hull.
Only around half of those who attended events completed an equalities monitoring form and
therefore some of the demographic information on attendees in incomplete. From the
information that is available, participants ranged in age from 38 to 79 and were of roughly equal
proportions of male and female participants (54% female, 44% male, 1% non-binary).
Of the 65 who pre-registered online and did attend the workshops, they were interested in the
following specialties:
Cardiology only = 25
Critical care only = 1
Cardiology and critical care = 7
Stroke only = 10
Neurology only = 15
Stroke, neurology and complex rehab = 6
Neurology and complex rehab = 1
Participants came to events from across the Humber region and many did travel to an event that
was in a different CCG area to the one where they live.
11
Feedback on Individual Specialties
The majority of the meeting time was dedicated to a facilitated discussion about the clinical
services under review. Participants were given some key background information in their packs
to support the discussion (see appendix 2). The focus of the conversation was on participants’
own experiences and their views and ideas for improving services.
Trained facilitators were available on each table. They took participants through a SWOT analysis
to identify strengths, weaknesses, opportunities and threats in relation to existing services in
each of the clinical areas covered by the event.
Strengths
What has been good about your experiences
of neurology services?
Weaknesses
What has been not so good about your
experiences of neurology services?
Opportunities
What would make you happier if it were
available or done differently?
Threats
What would you not want to see changed?
12
Participants were encouraged to move tables if they wanted to contribute to more than one
specialty discussion.
The aims of the session were:
To draw out what matters most to patients (and carers);
Gather their views on what is not working and might need to change;
To discuss ideas about what might work better – specifically in the context of the
challenges identified by the clinical leads in their presentations (written information and
infographics were also shared on the tables).
The feedback, comments and ideas were recorded by the facilitators and participants
themselves and then collated by the review team.
This report has been compiled by analysing the feedback across all sessions and grouping the
information by theme. The information has also been reviewed by the Humber Acute Services
Review Citizen’s Panel. The Citizen’s Panel is a group of up to 20 independent citizens from
across the Humber area, representing various geographical areas and bringing a range of
perspectives to discussions. The group acts independently to provide critique, support and
advice to ensure the views of patients and the public are considered in the review.
Cardiology
13
“It’s free
and it saved
my life”
“workforce with
ethos to deliver
quality patient
care”
“supportive
staff”
“I am a worrier:
ask heart club
organiser”
Cardiology
Positive things about current services
Participants highlighted a number of important strengths of existing cardiology services within
the Humber area. These can be grouped around three key themes:
Positive outcomes from treatment
Most importantly of all, participants reported positive
outcomes from treatment. Some of the positive comments
include:
People receive treatment and get better.
Lives are being saved.
It was successful surgery.
Speed of transfer to cath lab in an emergency.
It’s free and it saved my life.
Positive experience of care
Most (not all) participants also reported that their
experience of care was positive.
Everybody was marvellous.
Nursing staff spent 30 mins explaining.
Supportive staff.
Treatment good once in hospital.
Standardisation of end of life care planning helped me.
Good support pre and post hospital stay
Another strength that was highlighted by many participants was the benefit of having support
from others before and after their hospital stay. This included the benefits people felt from
engaging with peer support groups, exercise classes and other aftercare opportunities.
Some of the positive comments include:
Peer support really helped – it was good to speak to
someone who had already been through the same thing.
Aftercare and exercise classes helped recovery and
boosted confidence.
Good experience of community cardiology service
(Grimsby).
Cardiology
14
“I was like a rabbit
in the headlights: I
couldn’t take it in”
“The patient
doesn’t know
the path”
“My life was on
hold for 18
months”
Issues that need to be addressed
Participants described aspects of their care that were poor or areas where improvements could
be made. These can be grouped around two key themes:
Ineffective communication
Many of the negative experiences encountered by the patients who participated in the focus
groups was linked to a breakdown in communication – either between different parts of the
health and care system or between healthcare providers and them as patients. Ineffective
communications often led patients to worry more about their condition and what was
happening with their care.
Some of the comments made include:
Patients don’t know what comes next and are
afraid to ask because they know the doctors and
nurses are too busy.
Being sent home whilst waiting also added to
stress.
The experience of being in hospital with
someone who is seriously ill is very stressful; it
makes it much more difficult to take in the information that is
being given.
It wasn’t clear to me [the patient] how aftercare helped in the
recovery journey.
Not being able to see records/share with other care providers is a problem.
The path to getting care from the right person takes time – the patient doesn’t know the
path.
Delays and/or waiting
Another key theme when discussing weaknesses of existing services was the experience of
having to wait, either for treatment or for information. Many participants commented on the
impact of waiting on their own stress levels and described feelings of anxiety caused by waiting
and often not knowing what they were waiting for or how long they would have to wait.
Some of the comments made include:
Waiting for the letter was stressful – feeling of
powerlessness and not being in control.
Had to wait eight days in hospital before operation
(due to bed allocation).
Long waits between diagnosis and treatment or
between scan and getting results.
I daren’t miss a letter.
Operations were cancelled.
Cardiology
15
“Empower and
support me to
look after myself
when I go home”
“Treat the
person not
the illness”
Ideas for change and improving services
Participants were asked to come up with suggestions about how services could be improved in
the future. Some of the ideas put forward include:
Empower the patient
Patients want more information and to have a better understanding of where they are in ‘the
system’ and what will happen to them next.
Empower and support me to look after myself when I
go home – patient needs to feel cared for throughout.
Produce a flow chart for the patient to help them to
understand their present stage of recovery and what
to expect next – we need more information about
what to expect when.
More honest communications and discuss prognosis.
Promote support groups.
Involve families/carers.
Regular follow-up appointments, a number/named person to call
for reassurance when not sure about what to do.
Better use of IT/digital solutions
Currently too much reliance on traditional model e.g. outpatient clinics to give results.
Make use of digital technology to support patients with long-term conditions.
Promote diagnostic testing in the community to avoid hospital visits.
Improve record and information sharing (including prescriptions).
Improve access to care
Find ways to make services more accessible (including through better technology).
Improve bus services.
Care closer to home but transparency about which services might be centralised.
Happy to travel for best place for specialist treatment but concerned about transport.
Cardiology
16
“Will there
be job
losses?”
“Keep existing
services
locally“
Things people don’t want to see change
A number of things were highlighted that patients and their families/carers want to see
safeguarded in any future changes as they are important to them. These included:
Quality of service
Don’t want to see a reduction in quality of services and
access to skilled doctors.
Loss of existing staff – don’t want this to get worse.
Don’t want to see staff being pulled across to other sites
to cover gaps or vacancies in rotas.
Concerns about access
Do not move cardiac services at Castle Hill – it is amazing.
Keep the existing services locally.
Happy to travel for best place for specialist treatment but
concerned about transport.
Public transport links to hospital are good – not necessarily the
same for GP practices or other “community locations”.
Complex Rehabilitation
17
“…but only
if you can
access it”
Complex Rehabilitation
Complex rehabilitation services look after a relatively small number of patients and therefore
only a few of the attendees at the events contributed to the discussions on complex rehab
services.
Positive things about current services
Quality of care
Neuro rehab centre at Goole is fantastic.
Once in the service, it is second to none.
Great staff
Staff across both sites are brilliant.
They [the clinical staff] are very hard to replicate. Patients and their relatives understand
the challenges around recruitment.
Issues that need to be addressed
Access to appropriate service
Many challenges faced accessing service – it can be very
difficult to get a bed.
Limited community offer or discharge options after rehab.
Need ongoing rehab services (at home/in community) to
maintain skills and build confidence and independence after
discharge from complex rehab service.
Funding pathways are complex and don’t always make it
easy for the service to be joined up.
“The service
is second to
none…”
Complex Rehabilitation
18
“Develop and
upskill staff to
maintain
workforce”
“Do not reduce
staffing levels
any further”
Ideas for change and improving services
Participants were asked to come up with suggestions about how services could be improved in
the future. Some of the ideas put forward include:
Strengthen community support
Strengthen community-based provision – link with the ‘Living with’ programme.
Develop the support networks on discharge, whilst in rehab, to build relationships and
confidence with the individual and families.
Develop the workforce
The issue of workforce was discussed extensively and
participants made some suggestions to improve the
workforce situation:
Develop and upskill staff to maintain workforce.
Potential to develop a holistic staffing approach
and have a cross section that are generalists so
patients can be seen by one clinician rather than having many visits from different
specialists.
Things people don’t want to see change
Staffing
The key issue highlighted where people did not want to see
change was in relation to the staffing levels, which were viewed
as precarious already. Patients wanted to be reassured that
rehab specialists would still be available in the future design of
services.
Critical Care
19
“The best
quality care
you can get”
“Dedicated and
professional
staff”
Critical Care
Positive things about current services
Participants highlighted a number of important strengths of existing cardiology services within
the Humber area. These can be grouped around two key themes:
Positive experience of care
Participants talked about their positive experiences of care.
Some of the positive comments include:
Castle Hill intensive care service is good.
The best quality care you can get.
Good support for relatives and carers.
When it works, it’s great.
Great staff
Another strength that was highlighted by many participants was the
quality of staff providing the services. Some of the positive
comments include:
Staff were professional and very dedicated.
Great strength of specialty staff.
It is good to have advanced practitioners in critical care.
Critical Care
20
“Staff members were
always on the phone
asking ‘how do we
cover tomorrow’s
demand?’”
”
“Capital is
needed to bring
units up to
speed”
“What will
change when
I step down?”
Issues that need to be addressed
Participants described aspects of their care that were poor or areas where improvements could
be made. These can be grouped around three key themes:
Capacity issues
Participants were very aware of the limited capacity
within critical care and in some cases this impacted on
their experience of care. Some of the comments made
include:
Ward pressures due to number of beds.
Cancellations [of treatment] due to bed shortages.
Patients in beds because social care is not in place
yet – coordination between health and social care
could be improved.
I was left alone in a room with only electronic
monitoring equipment within 12 hours of operation.
Ineffective communication
Communication was an area highlighted for improvement by many participants. Some of the
comments made include:
Communication is an area where there is room for
improvement.
Would like better communication for patients and
families about what to expect next – what will happen
when I “step down”? I don’t understand the
terminology used.
Communication between consultants (especially
regarding medication) was not good.
Facilities and access
A number of the issues highlighted related to the physical environment and difficulties accessing
the service. Some of the comments made include:
Quality of units in Grimsby is not good enough –
need colocation of HU/HDU.
Capital needed to bring units up to speed – should
have best quality environment for the service.
HRI parking and travel issues.
Car parking charges.
Critical Care
21
“Need positive
culture and
workforce
retention”
“Opportunity
to bring units
together”
“Don’t train
staff then
lose them”
Ideas for change and improving services
Participants were asked to come up with suggestions about how services could be improved in
the future. Some of the ideas put forward include:
Support recruitment and retention of staff
The issue participants discussed most extensively was how
to improve recruitment and retention of staff within
critical care services in the Humber. Suggestions included:
Need positive culture to support workforce retention.
Incentivise to retain staff.
Improve networking and cross-site working.
Contractual stipulations with a minimum stay (2-5 years).
Promote individual training to boost progression and retention.
Promote new Grimsby staff residences to help attract people to
the area.
Involve patients and carers more
Carers should be recognised as expert partners.
More promotion of emotional support services for relatives and patients.
Improve clinical communication with patients about what care they need at the various
stages of their journey.
Technology
Embrace technology – improve ease of access to information for patients.
Digital technology creates opportunities to share skills and expertise between staff.
Computer system to have red flags for vulnerable patients – so don’t need to explain
issues every time.
Things people don’t want to see change
A number of things were highlighted that patients and their families/carers want to see
safeguarded in any future changes as they are important to them. These included:
Availability of resources
Don’t train staff then lose them.
Concerned about units not being able to progress with
improvements due to lack of capital funding.
Concerns about access
Don’t want services to move from Hull to Grimsby (or vice versa).
Keep services local where possible and limit risky transfers to those absolutely necessary.
Neurology
22
“I can ring if I need
advice between
appointments”
“Neurologist can
open doors to
other services”
“I always feel
listened to”
Neurology
Positive things about current services
Responsive services
One positive aspect that was highlighted by a number of the patients who contributed to
discussions about neurology services was the way in which services responded to their changing
needs. For example, clinicians arranged home visits if needed or followed up with a letter or
summary email to ensure the individual didn’t forget important information.
Being listened to and things being actioned.
Respiratory nurse did home visits.
Castle Hill Parkinson’s service – all round hard-
working, obliging and good communication.
Goole hospital is well equipped to deal with
families on a personal level. We are always kept
up to date. It is a small hospital, friendly and warm.
Having gone many years without care (in 1980s/90s), I now have
nothing but praise for the service – when was seriously ill,
clinicians did home visits and enabled recovery.
Skype appointment with rehab team in Sheffield was great.
High quality care
A number of services and individual clinicians were praised for the excellent service that they
provide.
The Brigg rehab team provides exceptional care (this team was mentioned by participants
at both sessions that took place in Scunthorpe and the session in Goole).
MS care in Hull is excellent – good to have MS expertise at Hull (from Scunthorpe patients).
MS nurses in Scunthorpe and Grimsby – we are really glad they are now in place.
Having a neurologist in NLaG has been a real positive.
We don’t mind travelling to Hull from where we live in Cleethorpes if we get good
treatment.
Multidisciplinary care
A number of participants highlighted the way in which neurology
services worked with a broad range of other health and care
professionals to provide holistic support.
Care is more joined up between care providers.
Brigg rehab provided by a multidisciplinary team.
Supportive networking clinically between Hull and NLaG.
Getting access to advice from a dietician was helpful [for father with Parkinson’s].
Neurology service is good at connecting us with other services (e.g. physiotherapy).
Neurology
23
“You begin to get
the feeling that
people are passing
the buck”
“I’m thinking
about
moving GP”
“The doctor
didn’t know
us”
Issues that need to be addressed
Participants talked about aspects of their care that were not good enough or where they felt
improvements could be made.
Ineffective communication
Communication challenges and some gaps that still exist between different parts of the health
and care system are impacting on some patients’ experiences of care.
Nobody gets back to you.
My address wasn’t updated on the system and
so I missed an appointment letter.
Links with GPs are poor – lack of information
with poor signposting; GPs don’t know where
to refer to neurology services.
No transparency around when and where
check-ups will take place.
Clinical staff need to appreciate patients and families are in a
strange environment – more tact and support would be better.
There are lots of locums and frequent changeover of staff.
Delays and/or lack of capacity
Waiting times and lack of capacity were also raised as concerns. Some of the comments include:
Procedure was cancelled three times and condition (MND) deteriorated in the meantime.
Long waiting times – if you don’t push you can fall off the system.
Appointments with MS nurses (Hull) meant to be every six months but actually every year.
Lack of neurology beds.
Boundary and access issues
In some of the discussions, the issue of commissioning and/or provider boundaries came up.
Where an individual lives in one Local Authority area but is registered with a GP in a different
CCG area, they often come up against difficulties accessing services, even when they are
recommended by their acute clinicians. Other access issues were also mentioned:
If you have not been seen for more than 12 months, you have to
be re-referred by your GP. You feel like you are wasting your
GP’s time just to get another referral.
There was some confusion amongst patient groups about the
links between the Hull and NLaG services – some patients on the
South Bank were under a Hull clinician, others saw a neurologist
at NLaG and there is a lack of clarity about why this is the case.
No parking when you get there.
Inequity of provision between different geographical areas – I can’t access the service my
consultant recommended to me because I live in the wrong CCG.
Neurology
24
“I’d like to have
one number to
ring where
someone can give
me advice”
Ideas for change and improving services
There were lots of suggestions made about how to improve services to make them more
responsive and meet the needs of patients in the Humber area better.
Single point of contact
Patients want to have access to advice and guidance when they need it, rather than having to
wait what can be a long time for a check-up appointment. In general, they feel able to care for
themselves/their relatives but sometimes have questions or their condition might flare up and
they would like advice from a specialist without having to
go through their GP.
Several participants described their experience from
other areas where they benefitted from seeing an
MS nurse twice a year. The nurse coordinated their
care, sign-posted to relevant places for support and
was available on the phone for advice and could
arrange an appointment with the consultant if
necessary.
Would like a helpline to call if worried or need
advice – would be happy for this to be part of a Humber-wide service.
Better use of IT/digital solutions
Offer outpatient appointments via Skype. This could be linked to local monitoring using
other technology/wearables so that consultant could also measure things like balance
remotely and only call patients in for face-to-face appointments when necessary.
A single care record accessible to all those involved in patients’ care (this is especially
important for patients with long-term conditions that can flare up – information needs to
be available to staff in A&E including who to contact for further information).
A central care plan that everyone can see, including GPs, neurologists, therapists and
patients themselves.
Educate staff by harnessing technology to support learning across sectors and specialisms.
Neurology
25
“Provide more
training for carers
and families”
“Offer group
appointments”
“Want to
see equity of
service”
Making best use of workforce
Many participants made suggestions about how to make best use of the specialist workforce
within neurology. Suggestions included:
Make every appointment count – provide more
information to patients in advance of appointments
so that time with clinicians is well spent.
Offer group clinics/group appointments for advice
and guidance (also helps build peer support).
Separate planned and urgent care so urgent care
doesn’t crowd out planned surgery and lead to
cancellations.
Use healthcare assistants (HCAs) or lower band nurses to do
home visits under supervision of consultant/specialist nurses to
reduce need for patients to travel and prioritise consultants’
time for those who need it most.
Trusts to link up better to provide high quality services across a range of specialisms.
Specialist neurology support/advice available to A&E staff when required.
Neurologist to provide ‘in-reach’ into other acute wards.
Enable more self-care – e.g. simple way to get antibiotics for a water infection without
being sent to A&E; more information about managing our condition.
Support for broader needs
Some participants told us that their lives would be better if they could access broader wellbeing
services more easily.
We need support with accessing benefits (e.g. Personal Independence Payments).
Would like more hands-on physiotherapy.
Can we get support to have broader needs met (e.g. can we make the local leisure centre
more accessible – currently it has no disabled parking).
Would like support for mental health and wellbeing.
More support for carers (including their mental health and wellbeing).
Improve access for all
Want to see equity of service – why do some go to Hull and
others Grimsby?
Flexibility over appointment times (not 9am for someone with
a neurological condition who is a wheelchair user).
Home visits when too ill to travel.
Clinics all in one place/time to reduce travel (requires better
coordination across departments).
Neurology
26
“Don’t want to
see services
diluted“
“Keep home
visits”
Things people don’t want to see change
A number of things were highlighted that patients and their families/carers want to see
safeguarded in any future changes as they are important to them. These included:
Quality of service
Don’t want to see a reduction in staff – especially the
new MS nurses in Grimsby and Scunthorpe.
Don’t want to see services diluted.
Continue to listen and talk to patients.
Is there higher mortality at weekends due to lower
staffing levels?
Concerns about access
Please keep home visits when these are needed.
The ability to ring and leave a message is really good – they
always call back. Please keep this up.
Access to neurology consultant at Scunthorpe has been beneficial
to my son.
Travelling to Grimsby is ok if needs be, but it is good to see Dr
Lazarus at Scunthorpe.
Stroke
27
“Reactive staff
acted quickly on
admission”
” “Dedicated,
lovely staff”
Stroke
Positive things about current services
Participants highlighted a number of important strengths of existing stroke services. These can
be grouped around two key themes:
Effective, joined-up services
Participants talked about some of their positive experiences of stroke care. They highlighted the
ways in which services responded quickly to need and how they were well connected across
hospital, GP and community services.
Some of the positive comments include:
Met by stroke coordinator when I came in by
ambulance and was immediately assessed and
scanned.
Good connections with other specialties – cardiologist
carried on support into the stroke pathway.
Liaison with community staff was good.
Early supported discharge in Hull and East Riding supported by the
stroke team.
Early rehab – I was pushed by the therapist in hospital even though I
didn’t want to; this had a positive result in the end.
Support from GPs after a stroke was excellent.
Peer support
The availability of peer support and access to clubs for stroke survivors was also highlighted as a
positive aspect of peoples’ experiences.
Stroke
28
“One size
doesn’t fit all”
“Not everyone
gets the stroke
information pack”
“Information
on website is
outdated”
Issues that need to be addressed
Participants described aspects of their care that were poor or areas where improvements could
be made. These can be grouped around three key themes:
Ineffective communication
Many of the issues patients experience stem from communication that is not effective either
between different departments and organisations or with patients and their families and carers.
Some of the comments made include:
When people are discharged not everyone gets the
stoke information pack and it is not updated.
Medication was given to a patient that was harmful,
which could have potentially been prevented by
care staff and clinicians communicating better.
Need to manage communication between voluntary
and community sector and health professionals
better in order to maximise support available.
Not found anyone who can communicate effectively with
someone with hearing difficulties (speak slowly and clearly).
Hospital refused to tell relatives what the after-care plan is post
discharge.
Attitudes of some staff
Some of the negative experiences that patients discussed related to attitudes, knowledge
and/or training of staff working within stroke services and also in other health and care services
that are not specialists in stroke.
Some of the comments made include:
Attitude of community physios was patronising and showed a lack of trust.
Staff don’t understand the challenges e.g. only being able to
use one hand.
No recognition or understanding of stroke when having
appointments with other specialties.
One size fits all approach to stroke patients in problematic:
what works for one patient might not work for another.
Bad news was delivered in a very matter of fact and uncaring way.
Rehab should be tailored – don’t put people where other patients can’t speak as it doesn’t
encourage speech.
Lack of capacity and inequity in provision
Don’t have enough scanners.
There is not enough community physiotherapy available.
Lower level of support and rehab available in some CCG areas compared with others.
Stroke
29
“Mobile scanners
could reduce
waiting times”
“I felt alone – need
more psychological
support”
“Promote
‘Let’s Talk’ as
standard”
Ideas for change and improving services
Participants were asked to come up with suggestions about how services could be improved in
the future. Some of the ideas put forward include:
Care that is more proactive and holistic
Participants discussed ways to improve patients’ recovery after a stroke and highlighted the
importance of support for mental as well as physical
health.
Provide holistic support, including support for
mental health and wellbeing.
Ensure patients have relevant knowledge e.g.
importance of continuing rehab.
Link people up with stroke survivor groups for
peer support.
More monitoring to prevent secondary stroke.
Would like to talk to someone after treatment (about post-
treatment worries).
Training and awareness-raising
Provide stroke awareness training to care home staff.
Train staff at HRI so that they can refer to voluntary groups and other peer support as
standard.
More information about signs and symptoms, including familial factors.
Improve access
Hold clinics in GP surgeries (they are more relaxed
and closer to home).
Mobile scanners could reduce waiting times.
Better parking and improved transport links.
Quick access to follow-ups.
Stroke
30
“Don’t move
everything to the
North Bank”
Things people don’t want to see change
A number of things were highlighted that patients and their families/carers want to see
safeguarded in any future changes as they are important to them. These included:
Quality of care (especially staff)
Excellent nurses who know how to deal with a patient – please don’t change.
Front door services from the paramedics and access to stroke coordinator at first point of
contact.
High focus on dignity throughout hospital stay.
Concerns about access
Don’t move everything to the North Bank
Worried about further reductions in funding and
impact on services in the future.
Decision-making criteria
31
Feedback on Decision-making Criteria
Background
During the sessions, we also asked participants for their feedback on the decision-making
criteria that have been developed to guide decisions that will be made later on in the review
process. The decision-making criteria were set at the beginning of the review process by the
review steering group in discussion with key stakeholders, which included clinicians, local NHS
leaders and local authority representatives.
The criteria are there to help decision-makers to understand and therefore take account of the
various trade-offs that are presented by different scenarios or proposals for change.
The purpose of discussing them with the patients and carers who attended the workshops was
to gather their feedback on which things are most important to them as people using services,
so decision-makers are aware of this when making decisions about future service models.
Specifically, participants were asked to read through the criteria. They were asked to discuss
whether the questions posed were the right ones when thinking about future service models;
whether any important criteria were missing; and whether there were any areas where further
clarification would be helpful.
Decision-making criteria
Decision-making criteria
32
Feedback on the decision-making criteria
Participants discussed the decision-making criteria and made a number of suggestions regarding
the content and terminology used. These can be summarised as follows:
Role of carers and families
Many participants highlighted the need to include carers, families and those who provide the
wider support network for patients in considerations regarding access, transport and experience
of care. They highlighted the importance of having family and friends around when undergoing
treatment and the role this plays in an individuals’ recovery.
Why ‘acceptable’ standards?
Another issue that was raised often in discussions was the choice of the term “acceptable” in
relation to clinical outcomes, standards of access and performance against waiting times.
Participants were surprised at what they saw as the bar being set at “acceptable” for the various
standards and challenged why partners are not striving for the best possible standards when
reviewing services and proposing changes.
What about parking?
Transport and access were discussed by most groups and participants shared stories about the
challenges they have faced in terms of physically getting to appointments and accessing
treatment and care. Often the access issues were not linked to the overall distance to travel, but
with things that affect the experience of travelling and ability to access care when arriving at the
venue.
For example:
Is it easy to find a car parking space when you arrive and will it be anywhere near the
venue for your appointment?
Does the venue have a bus shelter with comfortable seats and information about the
wait times for the next service?
If you are taking a poorly relative to an appointment, is there somewhere you can drop
them off and someone you can leave them with while you go and park the car if they
are not well enough to get themselves to where they need to go?
Participants were almost unanimous in their views that all of these access issues should be
considered when looking at transport and access, not just overall distances between sites.
Use of language
The final theme that was raised in most, if not all, of the discussions about the decision-making
criteria was that overall they were difficult to understand and they used language and/or
terminology that was not meaningful to patients and service-users.
Decision-making criteria
33
Decision-making criteria (refreshed)
In response to the concerns raised about the language used in the decision-making criteria and
to support broader engagement as the review progresses, an additional set of questions has
been devised to describe the decision-making criteria. It is hoped the refreshed questions are
easier to understand with a range of audiences yet still capture the essence of the criteria that
have been agreed as the aims of this review. The criteria have been re-written with the help of
the Citizen’s Panel, taking on board the feedback from the engagement events as outlined
above.
These refreshed criteria will be used in conjunction with (not in place of) the questions set out
on page 31. They have been developed to ensure those looking at proposals for future service
models (including patients, carers and members of the public) are able to clearly identify the
impact of those models on each of the areas identified within the decision-making criteria for
the benefit of decision-makers who ultimately have to take all of the available evidence into
account when making a decision on the future of acute hospital services in the Humber region.
The following alternative wording has been devised by the Citizen’s Panel:
Key Themes
34
Key Themes and Next Steps
It is important to note that there was a broad range of diverse feedback given from participants
over the course of the eight events and, therefore, it is difficult to summarise everything said
without losing the richness of the feedback.
Nevertheless, it is possible to identify some areas that were identified by the patients and carers
who took part as opportunities for developing and improving services. These should, wherever
possible, be taken into consideration when undertaking the next stage of the review and
developing proposals for the future of these specialities.
1. Develop and support the workforce
Participants in the focus groups highlighted a number of opportunities to develop and make
best use of the workforce within our acute hospitals.
Opportunities identified include:
Offer group appointments and ‘one-stop-shops’ to make best use of clinicians’ time;
Do more to promote the area as a positive place to live and work;
Improve networking and cross-site working to provide peer-support for staff in similar
roles;
Provide higher level training to patients and carers to enable them to support
themselves and their loved ones better and help avoid crisis situations.
2. Give patients more information, knowledge and control
A common theme amongst participants was that they wanted more information about what
was happening in their care, how long they would have to wait and what to expect next in their
treatment.
In order to improve the experience of patients and their families and to enable them to look
after themselves better, a number of opportunities exist, such as:
Develop simple and easy to understand guides for patients that explain treatment
pathways and what to expect when;
Communicate to patients where they are in the queue and how long they should expect
to wait;
Provide support, training and permission for patients and their families to look after
themselves and manage their condition (with the option for responsive advice and
support when needed).
Key Themes
35
3. Make better use of technology
Participants were keen to see that hospitals are making the most of technological innovations to
improve services and make the most of scare resources (especially workforce). Technological
solutions were put forward by participants as a way to overcome access challenges and
disparities of service between different areas and support those in remote rural locations.
Suggestions for how to develop services through technology include:
Make shared care records available to all those involved in a patients’ care (including the
individual) as standard;
Support better cross-site working through the use of technology;
Enable video consultations to improve access;
Invest in wearables and other technology to improve remote monitoring and make
services more responsive to need.
4. Support patients to improve their wider wellbeing
In almost all groups, participants recognised the benefits of getting to know other people who
have had similar experiences. It is particularly important to those with long-term conditions,
progressive diseases and/or other disabilities to have access to wider services that can improve
their overall wellbeing that are not directly linked to the primary condition that they are being
treated for.
Opportunities to improve services were identified, which include:
Ensuring those providing acute services are aware of, and are actively linking patients
with, support groups and other activities/sources of support in their community;
Working with local authorities and wider health partners to improve the accessibility of
leisure services and other wellbeing support services.
5. Improve access to and equity of service
Travel and access issues were raised by many (though not all) participants. Many participants
recognised the need to travel, particularly for more specialist treatment, but were concerned
(often on behalf of other patients) that this might make accessing treatment more difficult.
Many participants noted that there are opportunities to improve the experience if they do have
to travel:
Make it easier to park and/or drop off loved ones more easily;
Consolidate appointments to reduce frequency of travel;
Enable more remote monitoring and video consultations;
Make sure patients from all geographical areas can access the same services as their
neighbours.
36
Appendix 1 – typical agenda
Humber, Coast and Vale Health and Care Partnership Patient Focus Group – Stroke and Neurology
Iron Bar Room, Scunthorpe United 7th March 2019, 2.00pm to 4.00pm
Time Item Led by
10 mins
Intro to the Humber Acute Services Review and
expectations for the session
- short intro video to explain review
- set expectations for the session
Linsay Cunningham
5 mins
Clinical Overview – Stroke
- reasons for service review
- key challenges/opportunities
Dr Ali
5 mins
Clinical Overview – Neurology
- reasons for service review
- key challenges/opportunities
Dr Lazarus
60 mins
Table-top exercise: What’s good/what’s not so good?
- semi-structured listening exercise
- aim of session to draw out what matters most to
patients (and carers) and also views on what is
not working and might need to change
- understanding the impact of any changes on
patients; carers and families
Table facilitators
15 mins
Table-top exercise: Decision-making criteria
- overview of DM criteria
- do we need any further clarification of these?
- have we missed anything out?
Table facilitators
5 mins Thank you and wrap up Linsay Cunningham
37
Appendix 2 – delegate pack
The following information was provided to those who participated in the
workshops to support the discussions:
Relevant specialty information leaflets - cardiology - complex rehabilitation - critical care - neurology - stroke
‘Case for change’ infographics (which describe the challenges facing the health and care system locally) - quality of care - healthcare is changing - workforce - finance
Evaluation form
Equalities monitoring form
Photo consent form
These documents are all available to view on the Humber Acute Services Review
website: www.humbercoastandvale.org.uk/humberacutereview