HEALTHWATCH ENGLAND – WRITTEN EVIDENCE (PSR0115)

Healthwatch England is the statutory independent national champion for people who use health and social care services. We’re here to find out what matters to people, and help make sure their views shape the support they need. We support our network of 152 local Healthwatch (in every single area of the country) to find out what people like about services, what could be improved and we share these views with those with the power to make change happen – particularly parliamentary select committees.

How have public attitudes to public services changed as a result of the Covid-19 outbreak?

During the pandemic local Healthwatch have continue to support tens of thousands of people every month to access health and care services and share their experiences. What is clear from what people have reported, is that the they are generally very sympathetic and understanding of the pressures on the NHS. Indeed, the level of public gratitude toward the NHS is running even higher than normal, with people really taking to heart the message about staying home to help protect the NHS.

However, this message may have almost been too successful, with NHS performance figures showing that people who have needed treatment have not been seeking help. This is partly driven by people’s desire not to be a burden on the NHS, but also by fear of getting Covid-19.

Interestingly, this more recent sympathetic public attitude represents a reversal of trend we were starting to see before the outbreak. Prior to the pandemic, Healthwatch across the country were hearing reports about a growing ‘lack of empathy’ being offered by services providing care[1]. This may have been due to the growing pressures on staff and the wider workforce, but also because people’s patience with under pressure services was wearing thin.

Although the circumstances of the pandemic and the general appreciation of the NHS and its staff have increased the patience of the public by temporarily replacing their growing ‘frustrations’ with appreciation, this is more likely only due to the public understanding the exceptional situation we all find ourselves in and will likely not last forever.

Healthwatch England and CQC’s joint ‘Because We All Care’ campaign[2] suggests that over a third (36%) of people said they would be reluctant to provide negative feedback in case it increases pressure on services or staff. A fifth (18%) of people now consider themselves even less likely to provide negative feedback on care. Among the key reasons cited were a recognition of the challenging circumstances health care staff face (56%) and not wanting to cause further issues for services to deal with (42%). 

This suggests that it is now more important than ever to proactively seek feedback from the public to ensure that services are able to improve and that people are genuinely satisfied with the high quality of care they receive instead of just accepting lower standards because of the wider pressures faced by the sector.

Why have some public services been able to achieve goals within a much shorter timeframe than typically would have been expected before the Covid-19 outbreak – for example, the increase in NHS capacity? What lessons can be learnt?

A lot of the ‘goals achieved’ by the NHS in relation to covid (such as the increase in people accessing digital health services, rapid discharges etc.) has largely been forced due to necessity, but it does raise questions around whether these are the right changes and are they actually working for people?

Before the pandemic, Healthwatch received limited unsolicited feedback about video and telephone consultations digitally, except in relation to mental health talking therapies.

Our research for the NHS Long-Term Plan – which saw us engage 40,000 people and carry out 500 focus groups nationwide - therefore asked about people’s attitudes to more online and telephone consultations for both primary and secondary care.  The main findings of that research were that there was indeed an appetite for technological/digital solutions, but not many people had actually experienced it themselves and people were also concerned that a digitally focused route would exclude some people.

During the pandemic however, we started to get feedback about the shift by GP surgeries to providing video and telephone consultations from early April onwards.  Most of the feedback we have had to date has been about GP appointments, but we are starting to hear about people’s experience of telephone consultations with hospital consultants, dentists, community midwives, district nurses and physiotherapists. We have heard positive, mixed and negative experiences.

Positive experiences often appear to be from people who might have been apprehensive beforehand that they would get effective care, but in the event are able to have a good experience – being able to talk to their GP from their own home and not have to travel to the surgery. People in rural areas have particularly welcomed this.

“As a registered patient, I booked online for a video appointment... A text arrived from the doctor at my appointment time. I clicked on it, was able to use the video app in seconds, and there was my doctor on my phone! I never thought it would work. He liked it as he could see me which might help a bit with diagnosis. He issued a prescription which was sent electronically to the chemist for me to collect same day. Very lucky to have this service!”  (Healthwatch Bucks)

Negative experiences tend to be around feedback suggesting that some GP surgeries are offering telephone or video consultations first and only offering a face to face appointment if the telephone or video consultation indicates that it would be appropriate.  It appears that people don’t have a choice of opting for a face to face appointment or even a choice of phone or video appointment.  This is problematic for some people.  For example, we have heard that people who have hearing impairments have been offered phone appointments and people with limited English not being able to opt for a face to face appointment.

“I have problems understanding people on the phone, which was why I was hoping for a video channel - Facetime or similar. I've looked into it now and my GP [practice] doesn't seem to have embraced that. And its on-line system is not working during the pandemic. So it's back to square one till I summon the fortitude to launch a telephone attack.” (Healthwatch Swindon)

We have also heard mixed experiences of email and online systems.  Some of these appear to be email-based and others online chat:

“The patient has had several telephone appointments with a GP, both before and during the pandemic. One was to suggest a suitable painkiller for arthritis, another to discuss progress with liver cancer.  The patient's first appointment with a Freeman oncologist was by telephone this month due to Covid-19 restrictions. They have also communicated by email - the patient thinks this is a better way to collect thoughts.  The patient thinks the GP should consider proper emails, not Artificial Expert systems which can be unreliable. One such use resulted in the patient being told to dial 999, when all they needed was some reassurance from their GP, which they got by phone, that they were experiencing soft tissue damage to the shoulder and not having a heart attack.” (Healthwatch Northumberland)

Finally, we have heard about those people who will struggle to use phone and online services to access health services.  These include people on low incomes who cannot afford a smartphone contract or home broadband, some older people, people with learning disabilities and some people with autism, people with dementia as well as people with sensory and communication impairments.

One of the positives arising from all this however, is that the circumstances have resulted in the bureaucracy of usual structures being broken down by the crisis management structures, removing some of the usual barriers faced when implementing mass changes at such scale.

The general feeling from local Healthwatch is that some barriers have been removed which has resulted in things that organisations/the system were wrestling with had become possible during the pandemic, giving an insight to what is possible.

We know that these vast changes across such a huge scale have been enforced without the right due diligence and correct public involvement but the key is to ensure that the changes are proportionate to the crisis and that the public do get their say before any changes become permanent.

However, all these new methods of working that have been put in place have not been evaluated yet to determine whether they are genuinely meeting the needs and achieving the outcomes for service users. Whilst telephone and digital services seem to be more efficient for clinicians and management, the real impact on patients and their clinical outcomes is not yet known and must be evaluated thoroughly.

Has the delivery of public services changed as a result of coronavirus? For example, have any services adopted new methods of meeting people’s needs in response to the outbreak? What lessons can be learnt from innovation during coronavirus?

One of the biggest changes introduced has been to the discharge process. NHSE brought in new guidance to speed up the process and free up 15,000 beds to help cope with the rising number of covid patients. The expectation placed on the system was that those medically fit to be discharged need to leave hospital within 2 hours. To facilitate this, extra money has been provided to reduce tensions between NHS and social care services about funding ongoing care. However, whilst this new approach has reduced bureaucratic burdens, the speed and pressure to get people out of hospital introduced potential risks.

To help ensure all patients get the help they need after leaving hospital, in April Healthwatch Brighton & Hove launched a Hospital Discharge Wellbeing Project[3] in partnership with Brighton and Hove City Council, Brighton and Sussex University Hospitals NHS Trust and the Sussex Health and Care Partnership (Integrated Care System). This collaborative project provided telephone support wellbeing checks to people leaving hospital and in collaboration with the NHS and local councils, they found ways to work at speed, overcome ‘red tape’, and get help to people just when and where they needed it.

Between 7th April 2020 and the end of May 2020, 350 people (both covid and non-covid cases) had been referred in to the service and they now have 60-80 referrals a week.

People are phoned by Healthwatch trained volunteers within a few days of discharge from hospital, usually in the first week. They are not a care provider organisation, so their role is to signpost and assist people to find the help they need.

43% of people needed some additional support and 35% had issues or questions related to their hospital discharge. Most discharges were handled well, and in the 350 referrals they have had only 3 discharges where significant, but avoidable, errors emerged. These were all able to be resolved promptly and in a spirit of putting the patient first.

This Healthwatch Brighton and Hove project has demonstrated that where there is a willingness hospitals, social care and volunteers can act quickly to help local people. This project was funded for 6 months as part to the COVID-19 response. Commissioners should consider whether this kind of intervention should become routine, ‘business as usual’. They are now extending the service to help check on people using home care services, particularly those whose Home Care packages have reduced over the COVID period.

The experience in Brighton and Hove, and across Sussex, has been that local Healthwatch brings an independent voice, the voluntary and community sector brings a close relationship and intimate understanding of vulnerable communities that is unique. When we combine those assets with the resources and public confidence in the NHS and social care, we have a powerful partnership to tackle the restore and recovery challenges of the future.

We challenge the NHS and Social Care to realise, as never before, that they are not always the best people to signpost, advise, and deliver services.

How effectively have different public services shared data during the outbreak?

The crisis management systems that have been put in place, both at national and local level, have facilitated a different information sharing environment. Prior to the pandemic it might have taken many months to build an evidence base on an issue experienced by people, the production of a formal report and then significant time for services to act on that information. This meant feedback systems were slow and people often lost faith in whether their views were being listened to or acted on.

During the pandemic however, services have often been in listening mode, hungry for intelligence that can help them respond to the rapidly changing environment. Services and policy makers have wanted insight passing to them on a daily or weekly basis and have become much more responsive. A good example of this was in relation to the mis-use of DNARs. Healthwatch picked up concerns about this in a number of areas and escalated concerns to NHSE. Within a matter of days NHSE had issues a statement to the entire NHS clarifying the position and prevent a damaging misuse of such measures.

Have public services been effective in identifying and meeting the needs of vulnerable groups during the Covid-19 outbreak? How have adults with complex needs been supported?

The biggest issue that we have found in relation to meeting the needs of vulnerable people is the lack of quality communications to different groups. There has been a lack of accessible information in formats appropriate to people’s communications needs including British Sign Language (particularly poor access to BSL interpreters), Easy Read and other languages.

However, it is important to understand that it is not just about the format or the language but the specific channels through which this is disseminated.

Healthwatch Oxfordshire for example, have been working hard throughout the pandemic to reach out to vulnerable groups and hear about the specific issues they were facing – one of which was the lack of accessible government guidance in languages for their sizeable African and Arab communities. Working with local BAME groups to develop a leaflet translated (into Swahili, Arabic, Somali, Tetum and Amharic), they were able to deliver these directly to over 700 specific households using their volunteers. This meant that those 700 households had access to vital advice and information that they wouldn’t necessarily have had otherwise.

Initially, demand for domiciliary care services declined as many patients were both increasingly wary of infection rates from visitors and had access to informal care through family members living through lockdown and/or changes to employment. If this trend continues in a second wave, particularly a longer wave, consideration must be given to the energy levels of informal and shared lives carers and the needs of those they care for.

Some councils enacting care act easements have looked at alternative ways of meeting these needs while day centres have been closed, but more must be done in planning to identify and support vulnerable groups ahead of potential further outbreaks.

Unforeseen consequences to relaxing the measures under the Care Act:

• COVID-pressures on an already strained workforce could mean it’s difficult for local authorities to provide the patient-centred care described in the easements guidance. This might lead to inequalities as even temporary delays to care packages from stage 2 onwards may be confusing to those with learning difficulties or autism – for whom this is already a confusing time, as they experience changes to their ordinary lives.
• Non-face-to-face assessments using telephone and video technology are being increasingly used under the flexibilities permitted under stage two. Although this was allowed under the Care Act, this is becoming the norm which isn’t suitable for everyone and are not always accessible to those with learning difficulties or autism.
• Where the easements are enacted, prioritisation of care needs will be left to local interpretation. In some cases, need levels may fluctuate and with a decrease in assessments to monitor these fluctuations, many with disabilities may not be prioritised. Similarly, if not prioritised, those with progressive conditions such as dementia may experience a deterioration in their conditions without continuing social care support.
• Where formal assessments are not possible but care support continues, local authorities can charge patients retrospectively for social are services. This may cause great concern and confusion for those patients with cognitive disorders or learning disabilities.

Were groups with protected characteristics (for example BAME groups and the Gypsy, Roma and Traveller community), or people living in areas of deprivation, less able to access the services that they needed during lockdown? Have inequalities worsened as a result of the lockdown? If so, what new pressures will this place on public services?

Although not a major theme in the evidence that has been gathered by our local Healthwatch, we have picked up a few specific examples that relate to challenges for Traveller communities from Healthwatch Brighton & Hove and Healthwatch Sheffield. Travellers in these areas had lost access to basic facilities (water and toilets) as the facilities they would usually use are/were closed due to Covid-19.

Healthwatch Sheffield also highlighted that many Travellers in their area are now without income as they can’t sell The Big Issue and are unable to sign up for Universal Credit without an address.

A criticism often levelled at service delivery is that public services operate in silos – collaboration is said to be disincentivised by narrow targets from central Government departments, distinct funding and commissioning systems, and service-specific regulatory intervention. Would you agree, and if so, did such a framework limit the ability of public services to respond to people’s needs during the Covid-19 outbreak?

Over a period of time, Healthwatch has called[4] for targets to be driven more by outcomes and measures that are meaningful to people, as opposed to merely activity-driven measures which are not always centred around users.

Having targets that are more focused around user experience/outcomes would help ensure that services were more focused on the needs of people rather than government priorities. Our work around A&E waiting times for example, suggested that shorter waiting times (less than 4 hours) didn’t necessarily equate to a better experience/outcome for the patient and other things (i.e. better communication and shared decision making etc.) improved their experience significantly even if they did have to wait slightly longer.

Whilst we don’t yet have evidence to say that any particular targets have directly hampered the response to the pandemic it is possible. For example the 2 hour target for rapid discharge. The focus on time rather than measuring the consistent safe transfer of patients from one setting to the next could have created issues. A more holistic measure could have prevented some of the problems that have emerged around patients being transferred to care homes without having been tested for covid.

Were some local areas, where services were well integrated before the crisis, better able to respond to the outbreak than areas where integration was less developed? Can you provide examples?

Healthwatch Dorset have reported that in their area, they are fortunate to have a well-supported voluntary sector through Community Action Network (CAN), Volunteer Centre Dorset (VCD) and Dorset Community Action (DCA). Working collaboratively with these local organisations, Healthwatch Dorset helped to coordinate the local volunteering response and share feedback about what is working well during Covid-19 and what isn’t to help facilitate services to adapt quickly.

This is a great example/success story of how local Healthwatch can work with local organisations to improve local services for local people and the crucial role they all play.

In contrast to this, in one area where a local Healthwatch said services were not integrated and had very little history of partnership approaches prior to the pandemic, the situation is not as positive. The approach of this particular local authority was to create entirely new infrastructure by utilising their leisure (and other) staff and putting them in co-ordination roles relating to the support for those shielding and vulnerable.

This approach meant it was slow to get off the ground and that there was an information and communication gap whilst the local authority mobilised due to the lack of co-designing the approach. As a result of this, there is now a lot of concern in the local authority about stopping the support for those shielding – due to cost and also due to concern that it is creating a ‘dependency culture’ with people relying on the local authority. This could have been somewhat different if it had all been more embedded in voluntary and community groups, as described in the positive example previously.

What does the experience of public services during the outbreak tell us about services’ ability to collaborate to provide “person-centred care”?

True person-centred care is only really possible when public/patient engagement is prioritised right from the beginning and embedded meaningfully throughout. Understandably, the response to the pandemic required speed and rapid responses which then nationally led to services defaulting to a ‘one size fits all’ approach.

On a local level however, although there was a more concerted effort to try think about approaches that would work better for different local communities, this task becomes more challenging for them without the right resources and powers. This is a genuine requirement that needs to be given to these groups to enable them to provide better person-centred care, but also for everyone at a national level to have the confidence and trust that it is being done. The reporting and compliance have taken priority over the actual response to the pandemic. This is a key lesson that needs to be learn ahead of any second wave or future pandemic scenario.

How well did central and local government, and national and local services, work together to coordinate public services during the outbreak? For example, how effectively have national and local agencies shared data?

As we touched upon earlier in terms of the gaps between the national Vs local response (and the need for knowledgeable and flexible local delivery and national assurance), could have been managed by better regional-tier leadership. STPs have fared very differently in this – some have taken control, whereas others we have been told by some local Healthwatch appear to have “disappeared”.

It is also unclear from a public perspective what exactly has happened with NHSE/I regions and the particular role they have played during. It is evident that there needs to be some form of regional-level representation to coordinate responses specific to that particular region but also for the public to have their say.

Looking to the future, and in line with the general trajectory in the NHS of decision increasingly moving to a more regional and sub-regional level, Healthwatch has been calling[5] for a new layer to be added to the existing Healthwatch Network structure, with a duty introduced for a relevant body to commission a Healthwatch service across an ICS (or equivalent) footprint.

Had this regional-tier Healthwatch been implemented prior to the pandemic, it would have allowed and promoted more cohesive collaboration at a regional level to coordinate both national and local public services more effectively during the outbreak. As we slowly exit national lockdown restrictions, a regional coordinator will prove to be even more beneficial given that further local/regional lockdowns (as we’ve just seen in Leicester) might get enforced after local outbreaks – thus creating a further need for a bespoke local/regional-level coordinated response and messaging for the public.

Can you provide any examples of how public services worked effectively with a local community to meet the unique needs of the people in the area (i.e. taking a “place-based approach” to delivering services) during the Covid-19 outbreak?

When the pandemic started, Healthwatch Stockport realised there was an immediate need for someone to coordinate local volunteers to support people who needed help[6]. They were aware that Age UK Stockport and other local charities would be flooded with calls from people needing help. They also knew that local people would want to help where they could. As support and resources for their local voluntary sector was limited, they offered to coordinate a volunteer database for other organisations during the COVID-19 outbreak. In addition, they also set up a central point for local organisations and services to update information on changes to health and care so people in the area could stay informed.

As the local council’s coronavirus helpline wasn’t available yet, Age UK Stockport and others were directing all volunteers towards Healthwatch Stockport. For example, people were calling for help with things like shopping and collecting their medication. As there was nothing else set up, their small team of two realised they would need to start doing the deliveries themselves.

As well as collecting essential items, they began to build a connection with local mutual aid groups. This meant they could pass over some of the practical elements of help to them, while building an idea of what support was available to people in Stockport.

At the same time, the local council set up its coronavirus helpline and Healthwatch Stockport began to work with them to coordinate people offering to help. They now have a list of over 300 people who want to volunteer. As well as the council, they also worked with their local Clinical Commissioning Group to organise their volunteers to deliver medication and have continued to work with their food banks to make sure people can get emergency food parcels.

They’ve also been working together with local charities, led by Public Health and Mind, to put together useful advice and information about mental health support in Stockport. They are now working with Stockport Advocacy and are setting up a pen pal service for people with learning disabilities and we are exploring different creative ways people can use to stay in touch during this time.

What lessons might be learnt about the role of charities, volunteers and the community sector from the crisis? Can you provide examples of public services collaborating in new ways with the voluntary sector during lockdown? How could the sectors be better integrated into local systems?

Across the country, local Healthwatch services have been helping people get accurate and reliable information about coronavirus (COVID-19), and in many places, they've been actively part of supporting their community's response to the pandemic. 

However, at Healthwatch Bracknell Forest, they have gone above and beyond[7]. Before the Government launched their campaign for an NHS volunteer army, they realised that Bracknell Forest needed a collaborative community effort to ensure everyone could get the help they need. They started by contacting their local council and community organisations and, in just two weeks, managed to bring together a team of 1,500 volunteers. 

Working with the local authority and voluntary community organisations, Healthwatch Bracknell Forest set up a helpline to help identify the most vulnerable members of the community. Using social media and posters, they raised awareness of the helpline along with a call out for volunteers.

In under two weeks, they managed to set up 14 different areas across the borough with DBS checked local coordinators and trusted members of the community such as local councillors, about four or five in each one. They were all local to the area so knew it well. Their role is to assign the volunteers in their patch to the different requests that come through and they now have over 1,500 volunteers in total.

Although they don’t get paid any extra (despite being underfunded generally[8]) for what they’re doing at the moment, they are working round the clock – the helpline is open from 8am to 10pm. They’re only a small service but have achieved a great deal and it couldn’t be done without the joint effort of the council and organisations that they worked with. There is a real family feeling locally because they know they’re in this together.

July 2020