News Consultation event on improving services and treatment for people with mood disorders
On 12 January, service users and carers attended an event at The Life Rooms Bootle. They shared their different experiences and insights to help us shape the design of a new, dedicated mood disorders service for Mersey Care NHS Foundation Trust.
Prof Dan Joyce leads the consultation event on improving services and treatment for people with mood disorders.
The event was attended by 15 service users and carers with lived experience of mood disorders such as depression, bipolar disorders, seasonal affective disorder (SAD) and dysthymia. It is the first of a series of consultations with different stakeholders that will take place.
The workshop was hosted by Prof Dan Joyce who is the Lead Investigator in the Mental Health Research for Innovation Centre (M-RIC) mood disorder care innovations work package. He is also a Professor of Connected Mental Health at the University of Liverpool and a Consultant Psychiatrist at Mersey Care NHS Foundation Trust.
Topics for discussion focused on people’s previous experiences of accessing help for mood problems and how the process could be improved. Initial plans were also presented describing the new regional mood disorders service, which will be hosted by Mersey Care NHS Foundation Trust and based at the Whiston Hospital. Participants were asked to critique the proposal and to contribute their thoughts and views.
Several key themes were identified from discussions at the consultation event which will now be used to inform the ongoing design of the new service. These included:
- All staff, whatever their role, should treat service users with respect and compassion so they feel listened to and they feel their experiences are validated.
- The time available to people — and the quality of experience service users have in services — is vital to establishing meaningful working and therapeutic relationships.
- Participants wanted to increase their knowledge and understanding of mental health so they are able to better articulate their experiences or difficulties and have more meaningful discussions with their clinicians.
- Assessment could be improved by ensuring the process for diagnosis is not rushed, there is flexibility on how and when people access appointments and by ensuring there is more bespoke support for people who face different challenges in accessing services.
- Care planning and treatment could be improved through increased support for service users, easier access to services when they are needed and service users having named clinical staff who they know and trust. It was also suggested that service users would value updates and “check-ins” while they wait to receive assessment and treatment.
- A consistent and strongly communicated message was how difficult people found navigating NHS systems.
Key workshop themes and feedback in detail
Shared relationship of service philosophy, attitudes and skill of staff
- People emphasised that the first contact with services can be frightening in terms of not knowing what to expect.
- People from different generations (i.e. younger and older people) may have different prior experiences and expectations.
- Training is required for all staff in a service, in any role. Across services (voluntary sector, direct clinical care and mental health-focused supportive services) there is a need for training to compassionately engage with people in a way that validates their experiences (of services previously) and their current difficulties.
Person at the consultation event
Time and quality of experience with clinicians and services
- A poor experience with a service is sometimes worse than no service or contact at all.
- Right person, right time: including culture affirming and service provision adapted to individual’s needs
- Within the group, there was consensus and understanding that primary care is over-stretched and the capacity for GPs to manage people with depression is unsustainable. This is due to the need to keep appointments short in duration at initial contact, and similarly, follow up is difficult to deliver in primary care.
Psychoeducation (learning about and understanding mental health and wellbeing) for service users
- If you possess the vocabulary to describe your experiences, it can help you frame and understand your difficulties – this in itself helps break the problem down and helps you deal with the challenges. One participant reported that simply having a conversation with their GP about what mood is and how to conceptualise this as fluctuating or cycling over time, responsive to internal and external factors helped. Importantly, psychoeducation was not seen as necessarily pathologising, but rather, helpful for “naming”, recognising and understanding their experiences.
- Participants identified that diagnosis is important, but only if it is meaningful (it can be understood, is described in a way that captures or aligns with a person’s experiences). Otherwise it is unhelpful (e.g. mis-diagnosis).
- Many comments during the session highlighted a desire for service users increasing their own understanding of topics such as:
- what is the experience of having depression / problems with mood?
- understanding triggers for variations in mood
- how to take ownership of treatment plans and how to use interventions (medication, psychotherapy, social and behavioural approaches)
- the role of sleep in mood problems.
Specific aspects of service provision: what could be improved?
Assessment process
Participants identified factors around the assessment process that require focus in a new service:
- There needs to be adequate time for robust assessment. This will avoid not only missing important detail but also, not making snap diagnoses that can incorrectly direct the person down a pathway that’s inappropriate for their difficulties.
- The detail of an unhurried, high-quality assessment is necessary to enable personalised care.
- Adopting a holistic approach is important – this includes examining the social, psychological and medical aspects of a person’s difficulties. This would help avoid “false starts” and reduce the “trial and error” nature of current interventions/treatment.
- Enabling service users to identify and involve an ally or advocate in their assessment (and treatment).
- Flexibility on timing of appointments and the mode of delivery e.g. according to the service user’s preference, offering telephone, online or in-person appointments and accommodating their diary and commitments.
- There should be systems and processes for flexibly arranging appointments. This would avoid the traditional approach of being sent a letter with a date/time that is inconvenient and then service users have the difficulty of navigating NHS systems to re-arrange (resulting in missing / conflicting appointments, loss of appointment opportunities and high did not attend rates and similar system inefficiencies).
- Professionals should have training / expertise on neurodiversity and be able to adapt consultations accounting for neurodiversity.
- Cultural differences should be recognised and accommodated. This could include appropriately utilising expertise relevant to a service user’s needs by working with charities, the voluntary sector and community groups who have the skills and expertise to help service users obtain appropriate support and real benefit when accessing the new mood disorders service. For example, having peer supporters assist service users in clinical encounters so the person’s actual difficulties are clearly and accurately understood by assessing clinicians. This support could be as commonplace as having a trusted interpreter or, helping a clinician understand culturally specific expressions of distress or symptoms.
Care planning and treatment
Participants identified factors around care planning and treatment that require focus in a new service:
- There was a consensus that services should formally recognise and include social relationships and peer support in care plans and interventions.
- It needs to be recognised what kind of support is required so care/treatment plans can be personalised to accommodate this. The focus should be on what is needed and being flexible, rather than being limited to what is available / or expected to be needed.
- Healthcare professionals should be known to the person using services to enable an ongoing, trusting relationship between service user and clinician (similar to your named GP in primary care). This was highlighted as particularly important when someone is in crisis.
- Support should be easy to access at the right time. Participants noted that GPs remain the gateway through which care is accessed, but felt this may not be appropriate given the complexities (of mental distress) and pressures on primary care. There was enthusiasm for a self-referral route into the new mood disorder service.
- This follows in part because services operate an “in or out” model. People identified that their experiences of the effort required to navigate NHS systems to “get into” services instils a worry that on being discharged from a service or team, they will have to repeat this difficult process. This leads to uncertainty around “what do I do if this happens again?”
- Participants highlighted that they understand waiting lists are a necessary (if unfortunate) consequence of service supply and demand
- However, they described that having some feedback or brief contact from services about their “place in the queue” and to “check in” helps mitigate frustration or worry about being on a waiting list. Reassuring people that “you’ve not been forgotten” reduces the uncertainty that is commonly amplified by the people’s difficult experiences of navigating NHS services (primary and secondary care across all specialties and hospitals or clinics) and their referral “getting lost in the system”.