Service User views on NSFT Services between April 2013 and January 2014: Preliminary Report to Suffolk Health Scrutiny Committee, January 2014
[The report is reproduced here without amendment apart from the highlighting in red of key phrases by us.]
This paper summarises views expressed to Healthwatch Suffolk (HWS) by NSFT service users from April 2013 to January 2014, a period that included changes in services introduced from July 2013 in addition to feedback obtained prior to recent changes. It is not intended, at this stage, to be a comprehensive critique and appraisal of services, but broadly reflects the opinions of Service Users recorded to date. This short report is presented by HWS as a piece of evidence to inform the wider discussion of the HSC on proposals for the ‘Radical Redesign of Mental Health Services in Norfolk and Suffolk’ as identified.
2. Sources of information
Information has been gleaned from extended contacts with NSFT service users, and service user related organisations, at the HWS Mental Health Focus Group and at various forums run by HWS and the service user led Suffolk User Forum (SUF). HWS has also established a database for recording and analysing written comments received from members of the public and this has provided an initial set of results for NSFT. The database continues to expand and will, in future, provide increasingly diverse and detailed material.
3. Main messages
Quantitative analysis of written comments, although limited in number, shows that the responses of service users are predominantly related to
- difficulties in accessing services
- staffing and service quality issues particularly related to staffing attitude towards service users (reflecting, possibly, lack of training or work overload as well as a lack of empathy).
Qualitative analysis of the written comments as well as broader sources of information obtained from contact with service users leads to a number of key messages as summarised below.
3. 1. Generating Responses
Many problems are related to the inability of service users, including those in crisis, to obtain adequate and/or timely responses from the Trust. As is detailed below, this often involves access to support via telephone and wider issues of communication. The evidence gathered to date suggests that barriers and ‘silo’s’ exist that can be – and should be – tackled in the interests of greater efficiency in the provision of service and user experience.
3.2. Crisis Support Effectiveness
People in crisis in particular have registered serious concerns about the adequacy of crisis support. Service users report staff on the crisis support line are often rude or unhelpful on the phone even suggesting that they go to A&E or call the Samaritans instead. Service users discharged from secondary care seem in particular to be stranded without access to the support they need to prevent suicidal or self harming problems recurring.
In part these problems arise because NSFT seems not to be commissioned to operate a 24/7 crisis support service that meets the natural expectations of service users. One respondent suggested that shortcomings in this area create a sense of isolation at times when real need is paramount:
Respondent: I should ring the Samaritans instead of the trusts’ Crisis Team as they are unable to help me […]. When I was last suicidal that the crisis team were involved, I was told they cannot help me and I must be responsible for my life, they would not listen, I knew I was going to do something. They refused to help me and I have never ever felt so alone!!!
Another respondent, speaking to the SUF, suggested that there is a belief that one should ‘not call the crisis team if you are suicidal,’ instead you should ‘call the police or A&E as they are more understanding!’ Clearly, inference and genuine sense of dislocation is tangible here. This suggests that there is perhaps a connectivity between provision and expectancy, but that connection is grounded in the disparity between the two at this stage.
3.3. Understanding of Personality Disorder
On the subject of personality disorder, service users believe that the Trust lags in this area, in comparison say with the Haven Unit in Essex, and that staff training/understanding of this disorder is lacking. One respondent suggested that ‘people with personality disorder in Suffolk have been let down by the Health Authority’, augmented by a suggestion that a connection between the personal internalisation of a condition is often closely connected to a sense that recognition and understanding within the authorities charged with providing assistance and care can bridge the gaps that are otherwise considered remote and misunderstood:
Respondent: Having a diagnosis of a personality disorder instantly made me feel like my very being was flawed and I was a terrible person. It’s a horrible diagnosis name, but what I had to keep reminding myself was that, like everyone, I had areas of my personality that were positives, and areas that, like everyone, I needed to work on. […] Someone with a personality disorder is lacking skills, not having over enhanced skills like manipulation. People who have those problems have only developed ways to get their needs met, that’s all, but due to life challenges, those needs have had to be met in a different way from other people
On the subject of continuity of care coordinator and update of Care Plans service users report frequent changes of care coordinator and that in some cases (in supported housing) care plans have not been updated for 2-3 years.
3.5. Communicating Complaints
Concern has been raised on the subject of the handling of complaints. While the Trust formally operates the officially required complaints processes, these seem formal and defensive to service users who would like a more flexible and genuine approach from the Trust aimed at quickly getting to the root of issues raised. Service users also expect their verbal complaints to be captured and acted upon which does not always seem to be the case at present.
3.6. The new Trust Service Strategy
The consultation process on the new Trust Service Strategy, carried out by a series of Pathway Workshops for service users and carers beginning in late May 2013, suggested that while an improvement on the very poor engagement of service users prior to this date had been noted, it still did not succeed in giving service users the detail they need to understand how, or whether, their service is changing. Professionals in other organisations (including housing providers) have also professed themselves less than clear about the implications of the changes.
3.7. Overcoming Barriers in Communication
More generally, while NSFT are making efforts to improve service user involvement in the development of services – notably by revamping their User Scrutiny Groups and establishing Recovery Colleges – many service users believe that the prevailing Trust culture remains a barrier to true co-production. Encouragingly the Trust has responded positively to service user proposals to improve the crisis support service – specifically that all telephone calls should be recorded and that service users should help develop a training package for frontline staff. These developments however need to be fully implemented and a similar approach established across all Trust services.
3.8. Protecting Support groups
On the subject of Wellbeing Support Groups, service users in the community with serious ongoing problems such depression, anxiety and phobias seem to have largely lost access to therapeutic support of the kind previously provided by MIND. The Wellbeing support groups now operated by NSFT seem to be chiefly focussed on social support for people with relatively mild mental health conditions. Service users also flag that problems related to reduced hours of operation, the lack of professional facilitation, and the barring of new entrants is seriously undermining the viability and membership of many of these groups.
Overall the pattern seems to be that service users with significant ongoing mental health problems that have been discharged from secondary services are struggling to get the support they need in the community – both when in crisis or from Wellbeing support groups that no longer offer the types of therapeutic counselling they need.
While the data available to HWS at this stage is not sufficient to accurately discern whether service delivery is getting worse as a result of service reorganisation, service users have reported increased waiting times for assessment and delays in the allocation of care coordinators during the transition. Anecdotal reports have also indicated staff turmoil, confusion and transfer delays. The Trust itself has acknowledged transitional problems related to implementing the changeover and the need to provide reorientation of staff in their new roles and it may be that these problems are being resolved. Recently however service users have registered concern that waiting time problems are being overcome by triaging patients on basis of telephone contact rather than in face-face interviews.
4. Future plans for the evaluation of NSFT Services
We are mindful that the responses received by HWS during this period are not representative of the full range of issues experienced by the whole population of NSFT service users in Suffolk. The evidence we have received is inevitably slanted towards the initial subset of service users with whom we have had contact. It has also not been possible to track the impact of NSFT service changes on service users over time. Accordingly our future intention is to significantly expand collection of service users views during 2014 so that the evolution of a broad range of NSFT services can be tracked over time. The intention is that this will be carried out in conjunction with NSFT so that questionnaires can be widely distributed to all service users. Contact with the NSFT Director of Nursing has indicated support for this approach and the aim is to establish a jointly agreed program for service evaluation within 2-3 months that can provide, on an ongoing basis, extensive data to support future Scrutiny Reviews. SUF are also expected to continue to play a key role in developing methods of widening contact with the service user population in the county.