Independent Forensic Mental Health Review: interim report

5 Care and Treatment

People spoke widely about the care and treatment they received in forensic mental health system. They offered mixed responses about the use of medication within their care and the balance struck between the medical model, access to psychological interventions and the delivery of person-centred care. Relationships with staff were key to how individuals and their family members experienced care and treatment. There is consensus around the need for person-centred care. People's opinions varied about whether the system supports this or achieves it in practice.

People in the forensic mental health system experience poorer physical health and earlier morbidity than people in the general population. Some people expressed concern that physical health is not taken sufficiently seriously and felt that more could be done to address this.

5.1 Mental health care

5.1.1 Service ethos and person-centred care

Many services reported that person-centred, recovery-focused, holistic care are core parts of their ethos. Others spoke of evidence-based, rights-based, strength-based and trauma-informed approaches, the maintenance of a positive therapeutic milieu and 'least restrictive' practices. Services connect these values with MDTs operating in an integrated and collaborative way to ensure that people receive appropriate and timely interventions.

People want services to be flexible and to respond to the unique needs and rights of each individual within the system. People and their family members expressed frustration with services that failed to respond in this way. Some staff are concerned that the medical model may encourage a 'one-size-fits-all' approach which can get in the way of holistic person-based treatment.

5.1.2 Medication and the medical model

Some people expressed concerns about the continued dominance of the medical model. It was criticised for not reflecting evidence about the most effective first-line treatments and legitimising the denial of hospital treatment to people who do not respond to medication. One family member felt the system should be more open to less traditional pharmacological interventions such as cannabidiol (CBD).

People's experiences of medication were mixed. At its best there were some who had been provided with good information to inform their decisions and reported benefits to their mental health with no side effects. At its worst, people experienced medication as a form of control that had no positive changes but created dependencies. People described medication being withheld when they needed it in both secure hospital and police custody settings. Family members spoke of people being discharged from secure care without sufficient supplies of their medication. Community teams described variations in GPs' willingness to prescribe anti-libidinal medication, explaining that this can affect the implementation of MAPPA clients' risk management plans.

People and their family members stressed the importance of clinical staff providing full information on any medication, including its potential side-effects and long-term impact and the rationale for prescription. It was felt that the long-term physical side-effects of medications are not always made clear, nor other option discussed.

5.1.3 Psychological interventions

The majority of people said access to psychological interventions was very helpful. Some felt that first-line treatments ought to be weighted more towards these than medication. Advocates argued for a shift towards psychological services in care packages and for support to focus on recovery rather than risk management. However, some people said they found it difficult to engage with psychological interventions and others observed that those who do not or cannot engage with them are 'left to float around', as alternative interventions are limited.

People said that less secure hospitals do not have parity of access to psychological interventions and occupational therapy. These non-pharmacological approaches were seen as particularly critical for people in lower security because they support rehabilitation and safe discharge. Once discharged, people can struggle to access appropriate psychological services in the general adult mental health system in areas without a CFMHT.

5.1.4 Supportive relationships

People with experience of the forensic system emphasised that the quality and consistency of their interactions with the staff delivering their care and treatment makes a significant difference to their experience and recovery. Their satisfaction with services depends on feeling listened to, valued and understood.

There were significant variations in the relationships people have with staff and the support they receive from them. People who had positive relationships with staff talked about the benefits of staff who were approachable, non-judgemental and genuinely interested in listening to them and maximising their potential. Negative experiences included 'personality clashes' or individuals spending a long time in hospital before they found a supportive member of staff. Some people raised issues about abuses of power, unnecessary restrictions and bullying behaviour. People can share their concerns more freely when they have access to one-to-one sessions with nursing staff they know well. When units are short-staffed or reliant on nursing banks the quality and continuity of care can be negatively affected.

Family members said that when their relationships with staff break down it negatively affects people's recovery and progression. Some family members had particularly negative experiences related to disputes with senior clinicians and interactions with the police.

5.2 Physical health care

Professionals are acutely aware of evidence that people in the forensic system die earlier than the general population. This difference in health outcomes is larger for women. The main causes of death are cardiovascular or respiratory disease. It is common for people with a learning disability to also have other physical health issues, such as epilepsy, cardiac abnormalities and obesity.

Staff raised concerns about an increase of health conditions amongst the people under their care. These conditions include diabetes, ulcers and heart attacks. The number of people being admitted to general hospitals is increasing as a consequence. Obesity remains a significant challenge. Weight gain is a side-effect of some psychiatric medications and people spoke of wanting and needing to lose weight but it being 'difficult here'. It was felt that people could be supported to make healthier choices. However, this is difficult as one person complained that they never got enough vegetables and were not able to order more. Others simply said how much the appreciated any increase in the degree of choice they could have over what they could eat. Access to physical activity was also identified as critical to sustaining good mental and physical health.

Women's physical health needs are different from men's and they affect their mental health and well-being in specific ways. People suggested that women's physical health issues are not always taken seriously. Women seeking healthcare are often accused of manipulation or 'attention seeking'. Failures to address these needs were said to add to women's experiences of trauma and detract from their rehabilitation.

Access to GPs, pharmacies and dietetic services are important to help people maintain good physical health. Services also spoke of providing well-being clinics, health checks and access to general screening programmes. People's experiences suggested there is less access to dentistry.

5.3 Participation and decision-making

Submissions from NHS Boards recognised the importance of encouraging and enabling people and their family members to participate in decisions about care and treatment at an organisational level as well as for individuals. People highlighted the importance of staff relationships in facilitating their participation. Some people spoke of being involved in making choices about their medication or changes to the ward environment. Negative experiences included lack of access to clinical staff; not being listened to; invalidating an advanced statement; and finding staff had produced reports with contents that had not been discussed with them and which they disagreed with.

People talked about the importance of advocacy in supporting participation. Advocacy services can help people to understand information they are given and to exercise their rights.

5.3.1 Access to information

People can only effectively participate in decision about their care and treatment if they are given the opportunity and have access to all the relevant information. People and their family members said that their access to information and communication with clinical staff and social workers was variable.

Some people spoke of staff who go out of their way to speak with them and keep them informed, while others had experienced staff as not wholly honest or forthcoming in their communication. Examples of breakdowns in communication included: not receiving updates from MDT meetings; not being informed of key developments in care such as arranged transfers; and not being informed of errors such as failures to carry out MAPPA checks at the appropriate time. Some people felt that there was a culture of secrecy amongst staff.

People reported uncertainty or gaps in their understanding of parts of the mental health system where information could be better communicated. These include confusion about what treatment orders they are on and what these mean, the roles of staff members and 'the rules' of their unit. People felt services ought to be more proactive in their communication. For example, while they were informed of their rights (e.g. to appeal), they were not provided with enough information about how to exercise them. One person suggested that care-related decisions ought, by default, to be communicated in letters addressed to them directly rather than relying on hospital staff to relay information.

5.3.2 Language and communication

Advocacy and Speech and Language Therapists warned that the communication needs of the forensic population may be significantly underestimated. This is a problem because resources, information and rehabilitative programmes aimed at people in the forensic system are typically language-based. This means they are inaccessible to those with communication difficulties. Provision for people with different language and communication methods is variable. Rather than making people apply for adjustments under equalities legislation, a call was made to adopt the social model of disability and build more accessibility into the forensic system. Speech and Language Therapists want resources translated into accessible versions as standard. They also recommended that visual aids or other technologies such as 'talk mats' should be used more to help people understand their care and the restrictions placed upon them.

5.3.3 Complaints system

People who become subject to compulsory powers are in a vulnerable position. It is essential that there is a way for concerns and complaints to be dealt with quickly and transparently to protect against abuses within the system. Some people said they would not complain for fear of punishment, saying it is better to comply and 'keep your head down' in order to progress. For those who did raise concerns, experiences were mixed. Staff who were open and receptive to feedback from people were appreciated and one family member said that their complaint had been processed well. More often, people described staff reacting poorly to being challenged, concerns being dismissed as part of their illness or receiving no response. Advocacy organisations reported that the processes around disclosure of abuse for people with learning disabilities can be delayed by professionals as they consider the 'validity of the claim'. This can delay initiating investigative adult support and protection, placing this group at a disadvantage.

People felt that more should be done to lower the barriers for raising issues with staff. One person thought that senior staff could make it more explicit that people can come to them if they are unhappy about anything or think there is something wrong with their care.