Parliamentary Health and Social Care Committee – Call for Evidence

Community Mental Health Services

Written Submission from the Barnsley Mental Health Forum (BMHF) gleaned from service users (patients and carers) based on their experience of mental health (MH) services and their need for the support they offer.                                                                                                                

Summary

The BMHF is an independent group of Barnsley MH service users that exists to gather the views about local of other service users about local MH services and their ideas for improving the services.  We attend strategic meetings and share these views and ideas with MH commissioners and senior managers. 

We compiled some Service User MH Service Quality Standards from some poor eservice experiences they told us about, using their suggestions describing how to prevent repeats of these happening to others. These standards are now to be shared with all local MH services and used to improve service user experiences.  The key Standard messages are about how some barriers to good service experiences could be addressed.

The key messages in our submission are also based on service user suggestions and some system weaknesses we have observed attending some strategic meetings.

Our Blockers were – the decision-making process; accountability; episodes of care; and disconnected services.

Our Enablers are – parity with physical health; communication; and a mechanism to collect service user concerns and improvement suggestions

Our Good Practice example – is our own model of continuous service user (patient and carer) involvement in MH service planning and commissioning –  ‘Real co-production in Real Time’. We act as an independent service user voice and challenge when we need to. However, it would be difficult to scale up as there is an embedded system of paid individuals, Patient and Public Voice Partners, that attend MH meetings on behalf of service users, but having no contact with them, so they can only really represent the public interest.

About the Barnsley Mental Health Forum (BMHF)

We are an independent community group of local mental health (MH) service users,both patients and carers. We have no recurrent funds, have no premises as a base, and are all volunteers, not paid NHS Patient and Public Voice Partners (PPVs).

We exist to give local service users influence in local MH service decisions. We gather their views, concerns and suggestions for service improvements using both on paper and online surveys and face to face conversations.

Since 2018 we have met regularly with senior CCG, Trust and Public Health officers to share what service users have told us. We became members (2021) of the Barnsley Place Mental Health Delivery Group, and in 2022 members of the acute Trust Mental Health Operational Group. In 2024 we presented our Service User Review of the Barnsley Mental Health Strategy to the Barnsley Health & Wellbeing Board and our continuous co-production model to an NHS England PPV group’s ”Shining a Light on Co-production” webinar.                    

About our Service User Mental Health Service Quality Standards

In 2019 the Barnsley MH commissioner asked us to find out what service users felt was needed in the Mental Health Strategy.  

We developed a survey and shared it with service users. It included questions about getting MH support when they needed it, whether the support offered had helped, and if not what would have helped.  

We shared the survey report and were involved in developing the final strategy that includes a page of the key concerns raised in our survey and another of service users’ suggestions for improving services. 

Many responders described poor experiences of service, some said their mental health was made worse, even to crisis level, but gave clear suggestions how to prevent this.We compiled these suggestions into twenty Service User Mental Health Service Quality Standards, intended to help improve services, not as targets to be met.  After initial provider concerns that the standards were accusatory, an open discussion at a recent strategic meeting clarified their purpose. The MH commissioner shared the NICE Service User Experience of Mental Health Service Quality Statements saying many are mirrored by our Service User MH Service Quality Standards. 

The standards are now accepted by Barnsley providers and decision makers as the BMHF     co-production contribution from service users for improving local service. It was agreed for us all to work together using them to make MH services more effective in their support for local people who need them.                                

The BMHF Service User Mental Health Service Quality Standards are all very relevant to your questions and those that are particularly relevant will be referred to in our responses to them. 

The standards are included in full after our service user responses as an Appendix.                             

Q.1.  What does high-quality care look like for adults with severe mental illness and their 

         families/carers?

BMHF response:

 Service users tell us they want safe, effective mental health services that are:

• available when they are needed, for as long as they are needed, sensitive and respectful 
• easy to find out about and to contact with non-digital information and communication too 
• community based, or easy to reach by affordable public transport
• offering face to face options not just digital services (that make some feel unsafe)
• All 20 of our standards apply                                                                                      

  a) How could the service user journey be improved both within community mental  

        health services and in accessing support provided by other services/agencies?

BMHF response:

Service users tell us that:

• different MH services are disconnected when transferring people to each other and that effective transition protocols would prevent them having no MH support waiting for the referral to work, and sometimes leading to escalation into MH crisis – Standards 3.-5. 
• Service criteria can exclude people when their MH needs fluctuate daily, escalating or reducing – this needs addressing – Standard 10                                                                                

• How could this be measured/monitored locally and nationally? 

BMHF response:

Service users feel strongly that locally and nationally:

• MH service decisions are made without considering service user experiences
• decision makers don’t check to find out what makes services work well for patients 
• NICE Community engagement: improving health and wellbeing – says that local  

  community should be involved in monitoring, evaluating and setting priorities 

• data is not collected of the suggestions made by service users for service improvements
• there is no accountability mechanism to check the effectiveness of MH service decisions:
• there needs to be impact assessments for all significant service decisions
• and regular review checks for how effective MH service decisions are once implemented
• Standards 1.&2. Apply                                                                                  

Q.2.  What is the current state of access for adults with severe mental illness to 

         community mental health services?

BMHF response:

Service users describe barriers to accessing MH services:

• a lack of clear easy to find information, little is non digital
• appointment letters are insensitive to circumstances re. non-attendance and discharging
• criteria making it impossible to get help when MH needs fluctuate repeatedly 
• unacceptably high waiting lists ignored as national priorities
• time limited services meaning MH problems aren’t necessarily dealt with at discharge
• episodes of care should be based on need and timelimits should notapply if the need is ongoing
• See Standards 6.-13.                                                                                                               

1. What progress has been made in implementing waiting time and access standards for community mental health services?

BMHF response:

Service Users say there is no professional standards mentioned in planning meetings but some do exist that set standards for access and waiting times and other issues covered by our Service User MH Service Quality Standards. Both these were published, or updated in 2019::

• Royal College of Psychiatrists Standards for community Mental Health Services
• NICE Service User Experience of Mental Health Service Quality Statements
• The lack of awareness of existing standards is a problem
• Our standards mirror many of the standards in the above documents
• Standard 1 applies

• How could access be improved across the country?

BMHF response:

Service users say there needs to be:

• more information about services, that is easy to find, both non-digital and digital
• more open access services to support people to stay well and less time-limited services
• more out of office hours, and open access to support people when in real MH distress
• more MH beds, and more trained ward staff to support inpatients on MH wards
• include MH emergencies in all Urgent and Emergency planning
• ambulance services to categorise MH crisis as life threatening, not Category 3
• remove the system barriers to accessing MH services (waiting lists, criteria etc)
• See Standards 6-13    

Q.3.  Has the Community Mental Health Framework been an effective tool for driving the 

         delivery lower cost more integrated, person-centred community mental health  

         services? 

BMHF response:

Service users were not informed about the Community Mental Health Framework:

• those attending strategic meetings heard no discussions about them
• having now seen them, it is clear their intentions have not been implemented 
• when CCGs were abolished (2022) neighbourhood integration work ceased
• however, on 30^th January 2025 NHS England produced a new document Standardising Community Health Services which describes similar structures for integrating community services to those in the Community MH Framework document but it:                                                  
• excludes MH support services from the long list of community health services 
• and includes learning disabilities, (LD)
• LD is now ‘managed’ in a ‘department’ alongside MH, autism and dementia 

Q.4.  How can community mental health services work with social care, the third sector  

         and local government to better address service users’ health and wider social   

         needs that are wider determinants of mental health outcomes?

BMHF Response:

BMHF find this question disturbing given many years of numerous structural and system changes and numerous documents promising the way of working you describe in your question. 

BMHF agrees that services users’ needs need better support, and integrated services

• but after years of changes, that all promised this, it has still not been achieved         
• it feels like our care is becoming like ‘reorganising deckchairs on the titanic’
• service transformation plans need to recognise that:
• new policies, systems and structures create confusion if not given time to establish
• restructuring services often result in losing experienced staff (and their working relationships and contacts across the various services)  
• but community services still seem to be grouped in silos according to the support they deliver which doesn’t support holistic community MH service delivery 
• a lack of leadership prevents staff ownership of, and engagement in, the need for transformation
• better communication systems between services are needed and co-ordination of service user support are needed
• service transfer protocols for smoother, timely patient referrals between services are essential
• people’s circumstances affect their mental health, and support with the wider determinants of health need to be embedded in the mental health system and not just considered as a signposted optional extra
• All our Standards apply – especially Standards 3-5

1. How could the funding system be reformed to more effectively drive  

transformation in the delivery of integrated and person-centred community mental health services?

BMHF Response:

Our members recognise the lack of funds available for services, experienced recent service closures and reduced service staffing. Those attending strategic meetings note there are more short term services offered with no promise of continued funding.

• Lord Darzi makes important points about MH finance in his 2024 report:
• “MH accounts for more than20% of the disease burden, but less than 10% of the expenditure”
• in MH “there remains a wide gap between need and resources”
• “there is a fundamental problem in the distribution of resources between MH and 

 physical health”

• “a million plus are waiting for MH support, over a third wait over a year2
• “a million more people were in contact with MH services by 2024 than in 2016”
• the increasing need for mental health services means there will be a corresponding need for more services, more trained staff and more funding:
• just like more people round a dinner table means creates a need for more food and chairs
• NHS funds must be allocated according to the local MH needs, and not be top sliced so areas have to bid for extra funds to meet their local need, but not all bids get the money:
• creating MH inequalities by areas competing for money, even between deprived areas
• continuation of funding for successful pilots, instead of the funding coming to an end on 

completion of the pilot – which often leaves services users without continuation of the valuable services they need, (to fall off a cliff edge – with the safety net removed)

• use of business consultants to advise and design plans is inefficient and unaffordable,
• decision makers prioritise lower cost MH services over effective MH services:
• MH services save lives – they are not ‘products’ people may choose or not
• we attend some strategic meetings that focus on cost savings rather than MH support 
• announcements of funded ‘transformations’ – where funds barely cover set up costs 
• BMHF lobbied for 24/7 crisis care, significant funds were announced but the award only covered one day of crisis support
• funds need to be realistic and fair, and they should meet MH service shortfalls as priority
• transformation and service improvements need funding to be implemented successfully      
• service standards and evaluations also need funding 

Q.5.  What blockers or enablers should policy interventions prioritise addressing to improve the integration of person-centred community mental health care? 

BMHF Response:

ENABLERS:

1. MH parity with physical health:
2. good MH is as important as good physical health as NHS policy documents always say
3. if both were given the same attention and resources, our population would thrive
4. MH has lower, fewer targets to meet, fewer acute beds, no physical liaison on MH wards, but increasing physical restraint on MH inpatients with many not surviving the ordeal
5. Some MH wards offer “Victorian asylum standards” (Darzi report 2024) 
6. If MH services were given the same priority as physical health services it would improve the availability of MH support immensely, and also save lives:
7. It would even to get people well enough to go back to work meaning that the pressures being put on people to come off benefits when they are mentally ill would be unnecessary

• Communication:
• Communication has deteriorated, not improved by a digital world, this could be resolved
• Online meetings prevent networking conversations before and after in person meetings
• Service information on paper is no longer freely available, few places now display it
• In our area 20% of the population are not online, but that is where all information is now
• Opportunities for ‘in person’ communication, such as events, open days etc are important 

in building working relationships across the MH systems and meeting with services users

• Word of mouth is a powerful thing, much of our service user suggestions are ‘in person’
• Good communication channels help to build trust, share concerns and resolve them
• BMHF have attended and hosted ‘market place’ events that allow service users, carers and providers to meet find out what services are offered and what services are needed

• Mechanisms to gather service user concerns:
• There is a legal duty to involve people using services in plans and decisions about the availability of those services when they are needed H&SC Act 2022 as stated in:
• Section 26.14Z45, 14Z54 (2) (b) and Section 26, 116ZB (4) (b)
• Darzi’s report (2024) says that “there are real problems in responsiveness of services to the people they are intended to serve” and “examples where patients and their carers have not felt listened to” and also that “many staff feel disempowered and disengaged”
• service users and carers need to understand the big picture regarding MH services across the NHS, Public Health, Social Care and voluntary organisations to be able to get the help and support they need
• whereas staff and managers work within their sections and departments within their organisations without that requirement, but their insights that are also importan
• both service users and staff have a valuable knowledge and experience of how services are working that could contribute to the service planning and improvement discussions and decisions
• however, there is no mechanism for service users to raise any concerns about services
• there are NHS complaints systems, and engagement and feedback systems when the NHS asks people about their plans, or general questions e.g. ‘what matters to you’
• service users have many concerns but don’t always want to make a formal complaint 
• or to take legal action, 
• service users also have insights and suggestions how their concerns could be easily addressed
• but none of this information is collected as serious data to inform decisions
• It would make a real difference if service users were treated as ‘partners’ in care too
• Such a wealth of data should not be lost – creating a mechanism to do so is not rocket science, this is what the BMHF do, sharing it at strategic level where it is valued

BLOCKERS:

a)  The decision-making process needs to change: 

• MH decision makers need to be fully informed to make ‘effective’ decisions : 
• MH decisions are made with little understanding of how MH conditions affect people
• a disconnect exists between decision makers and the service users and frontline staff:
• the need for changes is not explained clearly to everyone in the system
• even the new structures (2022) are not explained, or everyone made aware of them
• this shows a lack of leadership in informing people and bringing them on board
• leadership also involves allowing and enabling the staff to use their existing skills and expertise across the various services and to do their jobs well – rather than focusing on trying to run services ‘on a shoestring’
• doing ‘to’ not doing ‘with’ the people they employ and the people they serve
•  few Equality, or Health Inequality, Impact Assessments are made before the decisions  
• decisions are not evaluated or monitored to see if the correct decisions have been made

b)  Accountability:

• Directors and senior managers should abide by the Nolan Principles of public service, that include accountability, but there is no mechanism to for them to be accountable to the people in the area they serve
• The NHS systems use self-assessments to monitor performance with no independent oversight except by the Care Quality Commission, that has been found underperforming itself recently
• Paid Non-Executive Directors and Trust Governors are selected by the NHS and are not required to be in contact with, or report, to the people they are assumed to represent:
• they can only represent their own views and the ‘public interest’ not the actual ‘public’
• the Patient and Public Voice Partners also are paid and are not required to be in contact with the people, but they speak and act for but cannot ‘represent’

c) ‘Prescribed Treatments’ and ‘Episodes of Care’:

• These are time-limited care pathways decided as policy, without public consultation, that have a significant impact on people living with many health conditions:
• they are not appropriate for most MH conditions, especial people with severe mental illness (SMI) and with long term conditions (LTCs) that need to be continually managed, with support
• LTCs, including enduring MH problems, do not get cured, they need regular reviews not time-limited interventions followed by discharge
• they also introduce inefficiency and inappropriate use of NHS resources by discharging people after an ‘episode’ so they need to ask their GP to re-refer them when they next need support – a waste of staff time when patient initiated follow up (PIFU) systems exist insights

d)  Disconnected Services:

• MH services across our local area or ‘place’ and across the area of the sub-region managed by the Integrated Care Board (ICB) are completely disconnected or maybe working in a number of separate silos:
• based on organisation, location, or type of support offered
• some organisations or groups are outside these networks altogether
• many services are not included in the MH service discussions and are not represented
• many service staff are not informed or involved in service planning discussions 
• many people use more than one service, others may be referred from service to service
• their experiences vary, many find they are left on a waiting list without any help
• others find criteria excludes them from getting any help:
• one survey respondent new to our town after fleeing domestic violence, was unable to get NHS MH help because she hadn’t yet managed to register with a GP

Q.6.  What are the examples of good or innovative practice in community mental health  

         services?

BMHF Response:

The work of the BMHF is valued in the Barnsley Place MH Delivery Group and the Barnsley Hospital Foundation Trust MH Operational Group.  

We carry out our own model of co-production, which we described as ‘Real Co-production in Real Time’ in our Shining a Light on Co-production webinar at the NHS England PPV group.

We are independent of service commissioning and service provision which is important. We have no staff or premises but have some IT equipment and a website thanks to a Lottery Community Fund grant. As we are all volunteer our own funding is an issue.

We have little contact or influence at ICB and ICP levels as these both involve people when they need some ‘feedback’, not on a continual basis.

We feel that the ‘now and then’ model of co-production relying on online analysis tools dilutes service user contributions. Also the ‘interpretation of service user suggestions into ‘management speak’ often loses their meaning.

The value of our survey work is in arranging follow-up meetings with providers and with commissioners to discuss service concerns or ideas raised about improving them. Commissioners find our approach useful.

Also the NHS system of PPVs has limited benefits for the wider MH service user community, whereas our continual involvement has impact.  The PPV system is costly with many commissioned trainers and webinar facilitators, payment to the PPVs and a department of support staff. It does not provide an independent service user voice from the wider MH community.

You may, or may not, be aware that between 1999 and 2009 there were service user (patient and carer) reference groups with elected board members presenting service user views at commissioning board level, in MH.  It was continual, independent service user involvement, and it worked well.  But the institutional memory is now wiped clean.

1. What needs to happen to scale up the adoption of these practices across the country?

BMHF Response:

It is difficult for us to answer this question as the existing PPV system and NHS initiated ‘engagement’ projects are fully embedded in the system, no doubt with contracts with webinar facilitating and PPV training agencies in place.

However, the Independent and continuous model of ‘real co-production in real time’ would not be any more expensive, possibly not as costly.

The value of the views and suggestions would be much more useful and constructive data to inform service planning and commissioning on a continual basis.   

APPENDIX

Barnsley Service User & Carer Mental Health Service Quality Standards

Compiled by Barnsley MH Forum from local service user experiences.

The Barnsley Mental Health Forum is also known as BMHF and Is a community group of mental health service users, patients and their carers, in Barnsley: 

• It is completely independent from Mental Health services, the NHS and the local Council.  
• It exists to inform the managers responsible for mental health services in Barnsley about our members’ day-to-day experiences of using them, as reported to us by them.
• It aims to share good practice, positive experiences, insights and ideas for improvement to work together with Barnsley MH services in a constructive way.

The BMHF pulled these Service Quality Standards together from Barnsley MH service users who told us how local MH services could work better for them, especially when they experienced problems getting support when they needed it.

These Service Quality Standards are a list of improvements suggested by service users themselves and:

• They are about the availability, quality, and effectiveness Barnsley people expect of local mental health services. 
• They are to be included in the Barnsley Mental Health Strategy and in its Delivery Plan.
• They will be monitored by BMHF members and report service improvements observed

National standards and expectations of MH services:

Standard 1.   

        Mental health services in Barnsley should know about any national quality standards that 

        the services they offer should meet.  The service managers should check:

• how well they meet such standards – every year 
• if there are any new, or updated, standards – every quarter – and 
• that their frontline staff know about the national standards

Standard 2.

        Mental health service users and carers, and anyone who may use the service, are always 

        involved in the:

• decisions about Barnsley mental health services such as: 

       –     planning which services are available, 

       –     how these are delivered and who by

                   –     how they are checked to see if they work well for people using them

• how accountable and effective are the decisions about mental health services
• the training and as appropriate, recruitment of key mental health staff 

Service working in partnership for integrated, seamless services:

Standard 3.

       Services should work together when different relevant services are working to help the  

       same individual at the same time.

Standard 4.                           

        Mental health services should have ‘transition agreements’ that make sure the support 

        continues when someone’s care is being transferred from one service to another service – 

        so they are not left without the support they need.

Standard 5.

        Services for people with a ‘dual diagnosis’ (two conditions, such as addiction & mental ill-

        health) should:

• be planned jointly to be sure both services are effective 
• use support staff that have expertise in both conditions

Access to services for MH support – existing barriers:

A – Lack of Information:

Standard 6.

         Information about how to get mental health support in Barnsley should:

• be well advertised, so people can find it – when they need it
• be clear what different services offer – in the way of treatment and support
• non-digital information must be available for anyone who cannot, or who prefers not to, use digital tools

Standard 7.

        People should be able to contact urgent help at any time, all day, every day, just like in any  

        other emergency, when they or someone else is experiencing a serious mental health 

        crisis. This could be: 

• a Crisis number to talk to someone, not an answerphone
• a safe place to go to and talk about their crisis to someone 

B – Appointments – digital only communication & discharges:

Standard 8. 

        Appointments should be arranged in ways that provide an equal level of service – by 

        making sure that: 

• non-digital (face-to-face) appointments are available 
• non-digital communication about appointments is possible
• appointment letters are sensitive to how mental health may change without warning, and on a bad day can prevent people from communicating

        And if someone misses an appointment:

• follow-up contacts should be made to check their mental health is not the reason 
• it should never result in them being discharged without investigating further

C – Assessments and criteria:

Standard 9.

        No mental health ‘needs assessment’ should be done by an automated telephone call:

• or by pressing buttons on a phone to answer symptom questions
• or by an answerphone that redirects people to a website.

        And – if someone is assessed as being OK (not in crisis) when they are seen by the liaison     

         service having attended A&E experiencing a mental health crisis:

• they may have relaxed once in a safe space 
• but – the cause of their distress will not necessarily have been sorted out
• and – they should always be a follow up contact, within 24 hours

Standard 10.

    Any criteria for using a service should be clear and should be explained when the 

    referral is agreed with a patient. No services should have criteria that creates a gap in a

        person’s support such as when:

• any criteria of a service bars them from using that service, but often no alternative is offered  
• they are referred to a service that meets their need, as other service criteria bar them, but are put on a waiting list to start the new service with no interim support

D – Waiting lists:

Standard 11.

        People on a waiting list should be contacted regularly to be given updates on when they   

        are likely to be seen, and to check their need to be seen hasn’t escalated.

Standard 12.

        No-one in significant mental distress should be put on a waiting list to get the mental health 

        support they need.

E –Time limited services:

Standard 13.

        Mental health services should:

• offer support for as long as it is needed to sort the problem 
• not offer treatments which are limited to a set length of time or number of sessions – and
• recognise that many mental health support needs fluctuate with good and bad days and that people can deteriorate very quickly without any warning, even to themselves.

.Carers need considering:

Standard 14.

        If it is known that a patient discharged from a hospital mental health inpatient unit has no  

        informal carers (friends or family) then there should always be a follow up visit within 48   

         hours.

Standard 15.

         Even if a patient has refused consent for their carers to be involved in decisions about their  

       care – all mental health services should:

• keep carers informed about the welfare of the patient, including inpatients – and   
• never discharge a patient back into their carer’s care without the carer’s consent 

Training in MH needed:

Standard 16.

       The need for mental health training of all GP practice staff should be regularly checked – 

       as services vary between different GP practices when people go to their local surgery for 

       mental health support.

Standard 17.

      Service users and carers should be given information (digital or paper), and offered some   

     training about mental health medications and what the different mental health diagnoses

    mean.

Improving Staff / Patient Relationships:

Standard 18.

        Staff assessing someone should introduce themselves and explain clearly what their role is 

        in finding the best way to help them: 

• if referring them to a service – they should give clear information about the service, such as if it has criteria, or a waiting list, and if they will be put on a waiting list say what other help may be available while they wait 
• if they are not referring them to a service – then they should give the reasons why and suggest where else to go for support

Standard 19. 

        Staff should treat service users and carers with respect and respond to each individual 

        according to their own circumstances, needs and preferences and:

• support them to seek relevant support if their circumstances affect their mental health – such as with:     

                  –     money, as poverty is known to be linked with depression  

                  –     housing; work; family; physical health; relationships; bereavement etc.

• respect their preferences such as:

                  –     the gender of staff supporting them – or

                  –     non-digital contact, communication and information 

Standard 20.

        Staff should listen to their patient, making no assumptions, and involve them in decisions  

        about their care, care plans, including crisis plans if these are needed, and their recovery 

        goals.