What was most important to you when thinking about your care in hospital.
Nearly 4000 people took part in this engagement exercise, either by filling in a questionnaire or taking part in a focus group. There will be more opportunities to get involved for anyone who wasn’t able to take part this time.
That being “seen and treated as quickly as possible” was most important.
In the questionnaire and focus group sessions, participants were asked to rank nine statements in order of importance with the option to add any further comments at the end. I am seen and treated as quickly as possible came out top in both sets of feedback.
You also said it was very important that:
- you are kept safe and well looked after.
- there are enough staff with the right skills and experience.
- things go well for you, and you are satisfied with your care.
The order of preference varied between different groups; however, these three statements were prioritised most highly when an average was taken across the board. The three things that were consistently ranked lowest were: I am able to get there; good quality buildings and the latest equipment; and services are good value for money.
It is important to note that participants were forced to rank the statements in order of importance, so it does not mean these factors were not important at all, just less important than the others. Some comments noted that it was difficult to rank these statements and that they were all important factors to be considered.
We asked about what matters most because we want to pay particular attention to the things people have told us are most important when we look at how we might provide services differently in the future.
When we compare the different ways of organising our services (known as the options appraisal stage of our change process), we will look to prioritise those options which make the biggest improvements to those areas you told us were most important to you. This process of listening will continue throughout our change programme so we can continue to respond to what you are telling us is most important and take these factors into account when designing ways of providing care in the future. We are continuing to ask the What Matters to You question within all our
engagement activities and will continue to listen to feedback.
You said that being “seen and treated as quickly as possible” was most important.
The feedback so far tells us that we need to pay particular attention to the current challenge of long waiting lists, particularly in those services most adversely affected by the Covid-19 pandemic. We also need our longer-term plans to ensure patients are seen and treated quickly in all services and that we design them in a way that means they can withstand any future shocks.
You said that compassionate and caring staff meant you were happy with your care.
The most common reason given for a positive experience was linked to the staff providing the care. When planning how we provide services in the future, we need to ensure staff have time to care. We need to make sure our plans for the future make the best use of the skills, talents and experience of our workforce, including those who will make up the workforce of the future. To do this effectively we also need to make sure we involve our existing staff in the planning process so that we can capture their ideas and aspirations in what we do.
You said that poor communication and issues with car parking made your experience difficult and stressful.
Participants identified a number of areas for improvement, notably communication and accessibility, particularly in relation to car parking. We need to make sure in the future we can provide seamless care for patients irrespective of whether they are being seen by a GP, a social worker, a consultant, a therapist, a nurse or any other health and care professional. We must take the opportunity we have through this programme to build in effective communications from the outset as a fundamentally important part of providing good quality healthcare. We also need to consider when we plan services how to make them easy for people to access, thinking about all aspects of accessibility, not just distance to travel from A to B.
You told us that different people have different priorities.
Whilst overall there was a high degree of consistency in prioritisation across all groups and cohorts of the population, there were some differences when we compared results by age or by role (for example, staff did not rank being seen and treated as quickly as possible as highly as patients or members of the public).
We need to better understand how changes might impact different groups.
Whilst we received nearly 4000 responses to our survey, the number of responses from some groups and communities was relatively low. We want to gather more feedback from those we have not yet heard from to help us when we come to make decisions.
The communities and groups we need to hear more from include:
• Children and young people – during our engagement we only heard from three people under the age
• People living within North and North East Lincolnshire – the response rate from people living on the
south bank was significantly less than that of people living on the north bank.
• People living in areas of high deprivation – we received a particularly low response rate from people
living within deprived areas of North East Lincolnshire, North Lincolnshire, and Hull.
• People from diverse ethnic backgrounds - 2,432 (95.40%) of people who we engaged with identified
as white. Only 53 (2.08%) people identified as Asian, Black, Chinese, or mixed heritage.
• People with protected characteristics – in particular, members of the LGBTQ community, people
living with learning difficulties, poor mental health or sensory impairment.
We also want to understand if peoples’ priorities change.
We want to listen more to our population as we continue to develop our possible options for change. We want to understand if peoples’ priorities change when we know more about what the possible changes might be and what that will mean for them.
Next, we will:
- ask our staff What Matters To You in a bespoke staff survey;
- listen to more children and young people to find out what they think;
- ask What Matters To You in all our other engagement on specific services;
- re-open our questionnaire and raise awareness to prompt those who have not yet responded to have their say.
The feedback and data collected throughout the 'What Matters to You' engagement programme will help us evaluate our different clinical options, and also ensure the decision-making process is fully informed by a range of views and opinions.
We gathered a wide range of feedback from patients, the public and other stakeholders from across the Humber, Coast and Vale region. This feedback was grouped under the following headings:
A number of ideas, issues and areas for improvement were raised through the engagement. These include the following:
Here are some of the ways we are addressing these issues and including your ideas in our long-term plan:
You can read more about how your ideas helped to shape our future plans on our website.
In early 2019 a number of focus groups took place across the Humber to hear from patients accessing neurology services. This also included three listening events hosted in partnership with the MS Society.
Participants were encouraged to share from their experience, what is working well and what is not working well within neurology departments in the Humber area. They were also challenged to come up with suggestions for how care could be improved for patients in the future as well as solutions on how to address some of the current challenges within the services, such as workforce shortages and performance issues.
In total 129 people took part. The findings report is available here.
What's Good when accessing neurology services in the Humber?
You told us that the service is responsive and able to adapt to a patients changing needs.
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.
You told us that the neurology service provides high quality care
A number of services and individual clinicians were praised for the excellent service that they provide.
You told us that you liked how neurology services provided multidisciplinary care (when different services work well together)
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.
What needs to change within neurology services in the Humber?
You said that ineffective communication is having a negative impact on your patient experience and needs to be addressed
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. Examples provided included how nobody gets back to you when you contact them and personal details are sometimes not updated on the system so letters get lost and appointments missed.
You said that delays and/or lack of capacity is a concern and needs improving
Waiting times and lack of capacity were also raised as concerns. Some examples provided included ling waiting times, lack of beds and procedures being cancelled numerous times resulting in a deterioration in health, :
You told us that there can sometimes be access issues depending on where you live
Where an individual lives in one Local Atuhority area but is registered with a GP in a different Clinical Commissioning Group area, they often come up against difficulties accessing services, even when they are recommended by their acute clinicians.
Your ideas for change and improving services
You would like a single point of contact with a specialist clinician for advice and guidance without having to go through your GP first.
You would like to have access to advice and guidance when needed with a specialist clinician, rather than having to wait what can be a long time for a check up appointment. You think this would help you manage your condition better and mean appointments can be retained for those patients who really need to see a clinician.
You would like to see digital solutions used better in delivering outpatient and follow-up care
You suggested making better use of IT and digital solutions to deliver outpatient care, examples included using Skype to offer video outpatient appointments as the clinician could still measure balance remotely, and a central care plan held digitally that GPs, hospital staff and patients can access and update.
You would like us to make better use of the workforce
Many participants made suggestions about how to make best use of the specialist workforce within neurology. Suggestions included; offer group clinics for advice and guidance which would also help build peer support; separate planned and urgent care to reduce cancellations of planned procedures; use healthcare assistants to do more home visits to help prioritise the consultants time for those who need it most; and enable and educate patients on how to self-care to reduce avoidable A&E admissions.
You would like more holistic support for your broader needs
Some participants told us that their lives would be better if they could access a broader range of wellbeing services more easily. Some examples provided included more hands-on physiotherapy, more accessible local leisure centres with additional disabled parking and better mental health support for both patients and carers.
You would like access to be more equitable
Some participants want to see equity of service, for example why do some patients go to Hull and others to Grimsby? You would also like more flexibility over appointment times, home visits when too ill to travel and clinics all in one place and time to reduce travelling.
The things you don't want to see change
You don't want the quality of services provided changed or diluted
You said that you would not want to see a reduction in staff or services, especially the MS nurses in Grimsby and Scunthorpe.
You would like how you access neurology services to stay as they are
You said that you want to keep home visits in place for those who need them and also that you like being able to ring and leave messages as they are responded to quickly.
How we have developed Neurology services across the Humber
Humber-wide Neurology Service (launching October 2021)
Developing a single service responds to those areas where patients told us we needed improve – like increasing capacity, having equal access to services for all patients and improving communication.
By working together as a single service, we will be a stronger team and be able to provide a better and fairer neurology service for all patients across the region.
Staff from across both hospital trusts will work as a single team with consistent policies and procedures and doctors will be able to request tests from any site where they see patients, with the exception of some specialist tests which can only be conducted at Hull.
Patients will be assessed more quickly and directed to the right specialist clinician straight away – rather than having an initial general assessment and then being referred to a specialist neurologist (where required).
Specialist clinics and services will continue to be run in Hull (as the Specialist Tertiary Neurosciences Centre), but the new approach will shorten waiting times for individual patients, particularly those in Northern Lincolnshire, and will ensure all patients have the same access to specialist care.
Having a single service will also create more capacity by having a more streamlined service, so we can see more patients and help reduce waiting lists overall
To read more about how your voice is making a difference to neurology services in the Humber, please click here to read our 'you said, we did, we will' feedback report