Availability of carer support

Availability of Carer Support

Given that our survey of forensic mental health services was modelled on the previous study of high and medium secure units in England and Wales by Canning et al (2009), we start by making comparisons between some of the results.  A response rate of 79% enables us to generalise with greater confidence, and perhaps evidences a high level of support and interest within Scotland’s forensic mental health services for this agenda.

Services self-identified a wide range of carer support in existence, and our finding that all Scottish forensic mental health services reported providing at least one form of support for carers is greater than the finding of the survey in England and Wales (Canning et al, 2009), which found that 74% of services were providing support.  Additionally, fewer Scottish units reported difficulties with setting up support.  However, while being able to contact a key worker could be an important support to some carers, it may be more limited in reality.  After support from a key worker/named nurse, the next best provision was of information, which we found was of variable quality.

Our findings indicate that carer support was not a widespread or consistent part of forensic mental health provision across Scotland.  Indeed, this study found inconsistencies and variability in carer support between services and areas.  Considerably fewer respondents in our survey (65% compared to 96% in Canning et al, 2009) recognised the benefits of providing carer support, which further indicates that forensic mental health services’ disposition towards engaging with the carer agenda was variable.

The average of 69% of patients in contact with their relatives reported by forensic mental health services is remarkably similar to the findings of Canning et al (2009), which estimated this at around 70%.  This does, however, mask a wide variation, ranging from as little as 20% to an estimated 100% of patients with carer involvement across different forensic mental health services.

There is the potential for some service respondents to have understated as well as to have overstated the degree of contact with carers given that these were estimates.  During our communications with staff in some forensic mental health services, it came to light that even when relatives visited patients regularly, they were not recognised as carers as such because nursing staff were caring for the person when in hospital.

This supports our earlier assertion that the real levels of patient/carer contact in forensic mental health services may be underestimated, and also that amongst some forensic mental health staff there is a lack of appreciation of the carer’s role.

The survey of services revealed far lower perceived levels of uptake of support amongst carers than might be expected in view of estimated patient/carer contact.  On average, just 43% of carers were reported to be accessing available support, which is comparable with that estimated by staff in high and medium secure services in England (44% in Canning et al, 2009).  Similarly, our finding that nurses and social workers were the staff most likely to be providing support to carers was matched in the previous survey.

Scottish services also reported less provision of specialised carer support, for example, for those caring for a relative with learning disability, with only 20% providing such support compared to 42% in the English study.  Similar proportions (57% in English survey and 58% in Scottish survey) claimed that they catered for Black and Minority Ethnic (BME) carers, although this was generally limited to accessing translation and interpreter services.

Future research should aim to better understand differences in socio-cultural views on caring, acknowledging that for BME forensic carers there may be additional challenges to those faced by white British/Scottish forensic carers.

Responses from both forensic mental health services and carers indicated a general awareness of a wide range of types of carer support.  However, we also found that many forensic mental health services were limited in the types of support they actually offered to carers other than general information and/or links with the patient’s key worker or named nurse.  Even so, some carers commented that after two years or so they still had not been told who the named nurse was for their relative, which does question its value as the lynchpin of carer support.

Carer support groups were reported by services as not being available in 42% of areas.  It was also likely that we heard from an over-representation of carers using carers support groups as the study was promoted successfully through two carers groups in particular.  Carers attested to the value of such groups, emphasising the many benefits of peer support, including fostering a greater sense of co-production with the clinical team.

The limited provision of carer support groups linked to high and medium secure services or organised by the voluntary sector meant that the diverse needs and interests of forensic carers with relatives in differing types of secure services were not met by available support.

Also, carers need to know about the existence of carer support groups and be offered support to attend if they need it:  some study participants only heard about such groups by chance and often from other carers rather than through staff promotion.  Overall, our findings suggest that both provision of carer support and the extent to which it may be accessed are inconsistent within and between forensic mental health services.

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