Stakeholder Stories

Patient Story (December 2024): The Patient Partnership Group ‘Reflections on 2024’

The Board was delighted to hear a presentation highlighting the work of the Patient Partnership Group (PPG) over the last 12 months. Discussions in 2024 have focused on Room 4 U, Day Time Confinement, a review of the TV Loan Scheme, the Nu2U patient charity shop, the Clinical Model, policies and procedures, catering, Supporting Healthy Choices, the Security Refresh Project and the use of wander paths. Feedback highlighted that the patients welcome the group as a ‘safe space to talk’ and for many it is ‘one of the highlights of their week’.

Carer Story (August 2024)

A story was shared with the Board by the grandmother of a patient, reflecting on her grandson’s journey from custody to recovery. Over a decade ago, her grandson was sent to prison, where she found him in a deeply distressing state—painfully thin, withdrawn, and experiencing frightening hallucinations. Fearing for his life, she was deeply concerned that without proper care, he would not survive prison. As his mental health worsened, he was admitted to the State Hospital for treatment. Initially, she was terrified by the belief that once admitted, patients never left the Hospital, and she struggled with the pain of seeing him enter high secure care.

However, over time, both she and her grandson grew to trust the Hospital, its staff, and the community of carers. She was overjoyed to see him gradually recover and return to his true self. Now, her grandson is thriving, preparing to transition to medium secure care, and looking forward to the future. She described the Hospital as a “lifesaver” for her grandson, praising the exceptional care provided to both patients and their families.

The Board welcomed this positive feedback.

Patient Story (December 2023)

The Patient Partnership Group (PPG) has been involved in discussions about Day Time Confinement (DTC) and the Hospital’s efforts to eliminate this practice by the end of January. The Board were delighted to hear of one particular patient’s experience and how involvement with PPG and in these discussions changed his perceptions and motivation. In the beginning, the patient did not fully understand DTC and that it could be a harmful practice. He enjoyed spending time in his bedroom and did not mind a lack of time in the dayroom, hub or Skye Centre doing activities. However, having participated in PPG discussions, he began to grasp the concept of DTC and why the Hospital needs to move away from this. As a result, he increased his activities and time spent socialising. This positive outcome was welcomed by the Board. It was good to see both staff and patients’ changed perceptions on DTC.

Patient Story (August 2023)

This story was chosen by the Patient Partnership Group (PPG) and focused on the impact of patient moves associated with the implementation of the new Clinical Model. It was delivered by a patient and related to his personal experience of being placed in an Admission ward following transition, and the subsequent impact of this on his own care and treatment.

He intimated that everyone wanted to see the new Clinical Model working but he felt that having been placed in an Admission ward was a backward step for him as he was so far on in his recovery journey. He stated that other patients were in the same position, but these patients had now been moved to other wards.

This story prompted discussion about the need for staff to be clear to patients about why they had been placed in a particular ward. The Board expressed thanks to the patient and the Person Centred Improvement Team for continuing to bring these powerful stories to the Board – whether positive or negative. It was acknowledged that the feedback from the patient was helpful in terms of further embedding the new Clinical Model. It goes without saying that the added value that patients bring from a service user perspective is fundamental to improving the patient experience.

Volunteer Story (April 2023)

A Volunteer Story was presented to the Board, reinforcing the importance of volunteer input as part of continuity of patient care and support. The Board heard about one particular volunteer who had a significant and positive impact on a patient’s progress through forensic services. Finding commonality and building a relationship over time, the volunteer commented on how the patient would count the days until the volunteer’s next visit. This volunteer continued to meet with the patient when he moved to a medium secure unit and continues to visit him currently within a low secure environment. This ongoing and consistent support has helped to boost the patient’s confidence and allowed the volunteer to continue to contribute to his progress.

Volunteer Story (December 2021)

This focused on the impact of Covid-19 on one volunteer and the loss of his valued role during the pandemic. The volunteer had recognised that volunteering at the State Hospital had given him a purpose and structure to his week. He felt lost without it and wondered how he could replace the gap in terms of loss of human contact and opportunity to have dialogue. He spoke to fellow State Hospital volunteers and together they designed a poster visually portraying just that. As a result, there has been a positive outcome. This volunteer has become a volunteer visitor. The Board expressed thanks to our volunteers and to the Person Centred Improvement Lead for continuing to bring these powerful stories to the Board. This story was particularly heart-warming. The Board recognises the added value volunteers bring from a different perspective and the mutual benefit the relationship brings to volunteers, patients and the Hospital

Patient Story (August 2021)

The Board heard feedback presented on behalf of a patient regarding their participation in an art project, and the benefit that this has had. The Board discussed the importance of meaningful activity, and the positive impact that this can have on mental health and wellbeing.   

Patient Story (May 2021)

The Board received a presentation on the creation of a clothing bank / early stages of developing a patient charity shop “Nu2U” where patients could buy second hand clothes, books, CDs etc.  The idea arose from discussions at the Patient Partnership Group (PPG) in response to concerns raised by some patients as a result of legislation which results in inequitable financial support within the patient group.  Patients have highlighted the shop, postage stamps and telephone costs are the same price no matter what income patients are receiving.  This causes ill feeling within the patient group, frustrations around there being no alternatives and can lead to no choice, and trading of items. The Board noted the following benefits for patients:

• Staff can refer patients for access to the clothing bank for patients with no money, or new patients arriving without any property.
• Patients would be encouraged to recycle, rather than disposing of items.
• Educational opportunities through learning new skills as the shop will be run by patients who can undertake certificates in e.g. Book-keeping, Customer Service.
• Promotion of daily living skills, i.e. donate items that are clean and ironed.
• Patients could get clothes that they normally would not be able to afford, i.e. designer brands.

The Board felt this was a great initiative on so many levels.  In particular, how we can resolve and support this inequality issue through rehabilitation and re-enablement activities. Appreciation was expressed to the Person Centred Improvement Team for the positive success achieved through initiatives such as this with the Patient Partnership Group.

Patient, Visitor and Staff Story (February 2021)

The Board received a presentation in the form of reflections on a recent visit from the perspectives of the patient, visitor and staff facilitating the visit. Although acknowledging the value of video visiting, feedback shared reinforced the value of in-person visiting.  The Board welcomed this important and insightful feedback and conveyed thanks to the Person Centred Improvement Team for the valuable work they do in bringing the experiences of patients, carers and volunteers to life for the Board.

Patient Story (October 2020)

The Board listened to the recorded narrative of a patient who read a poem produced by patients through the Patient Partnership Group (PPG).  The poem described the collective patient experience of care in the State Hospital during Covid-19.  The poem, whilst including some humour, was very touching, relaying a range of emotions including loneliness.   The Board was in agreement about the powerful nature of these stories and expressed gratitude to all the patients who participated in the poem project, and asked that feedback be provided to these patients in regard to how well the poem had been received by the Board. Sincere thanks was conveyed to the Person Centred Improvement Team for the valuable work they do in bringing the patients’ voice to life for the Board, and in new and innovative ways.

Patient Story (August 2020)

The Board listened to the recorded narrative of an individual patient’s experience of care in the State Hospital having been tested positive for Covid-19.  The patient described a wide range of emotions including anxiety and fear.  He felt well and couldn’t understand why he was being isolated in his room.  It was a lonely time for him with staff limiting contact to see to his needs.  He wondered why they didn’t stay for a chat and felt like they were treating him as a stranger.  

One staff member took the time to joke with him and he really appreciated that.  He really missed the normal interaction with staff and patients.  This experience was very early on in the Covid-19 journey and does remind us of how far we have come since then.  He spoke about there being a lack of information during his isolation and offered to help produce a leaflet for other patients so they knew what was happening and why.  We enlisted the patient’s help with the production of a leaflet for symptomatic patients.

Feedback from the wider patient population was also welcomed by way of a Graffiti Wall which captured patient feelings at that time.  The Graffiti Wall was created by patients and populated with short, snappy words from patients across the site.  One of the key words used was ‘adapt’ which patients attributed to staff ability to adopt a very flexible approach to supporting patients, adopting an individually tailored approach during this time.

The Board noted that there was considerable learning from the experience that this patient had when he was isolated in his bedroom, and the need to ensure quality care delivery and patient experience, while retaining focus on infection control and reducing the risk of viral transmission. 

The Board once again stressed appreciation to the Person Centred Improvement Team for enabling the patient to share his experience, noting how powerful the recorded narrative is in terms of bringing the story to life.

Volunteer Story (December 2019)

This story captured the mutual benefits of the volunteer placement for both the Volunteer and patients. In the Volunteer’s own words:

“My motivation to volunteer at the State Hospital stems from my ambition to pursue a career as a Forensic Psychologist. Prior to starting my voluntary position within the State Hospital, I wasn’t sure what to expect. I had done some research to gain more knowledge about the Hospital and specifically enjoyed reading about the research projects conducted investigating the effectiveness of animal assisted therapy. Therefore I expected the working environment to be very professional which would teach me how to conduct myself in a forensic setting and build my communication and team working ability.

“I must admit, volunteering at the State Hospital has exceeded all my expectations. My role within the Gardens has helped me discover a sense of personal achievement and satisfaction whilst cultivating enriching friendships. The social contact aspect of helping others has had a profound effect on my overall psychological wellbeing and I now feel more confident and less anxious which is something I struggled with until I became a Gardens volunteer.

“Having the opportunity to interact with individuals who are in need of help, advice and support is extremely rewarding and to me experience such as this is incomparable.

“During my MSc interview a great deal of focus was placed on prior experience. I was able to demonstrate that my role within the State Hospital has provided a tangible link between psychological theory and criminal behaviour specific to this high secure setting.

“I was also able to demonstrate that my experience as a Gardens volunteer has enhanced my academic and practical proficiency through the development of key transferable skills, as I am now able to communicate clearly and empathetically with clients and establish a rapport with individuals who have mental health disorders and learning disabilities.”

The Board welcomed this powerful, positive feedback.

Patient Story (August 2019)

The Board listened to the recorded narrative of a patient on behalf of patients across the Hospital who engaged in the ‘What Matters to You?’ initiative on 6 June 2019. Patients were asked to reflect on what was important for them in terms of a positive experience of time spent in the ward and when engaging in Skye Centre activity as well as sharing their thoughts about experiences which were not so positive. Teams across the site subsequently collaborated with patients to develop action plans supporting improvements. In the spring of 2020, an award will be presented by patients to the staff team whose input has resulted in the most positive impact on improving patient experience. The Board noted the themes emerging around placement closures, access to fresh air, patient grouping and the value of activity. Feedback shared was acknowledged as being helpful in terms of informing the ongoing project relating to the Clinical Care Model.

Carer Story (May 2019)

A recorded narrative of a carer’s story was presented to the Board. This was about her experience of contact with services as she supported the patient, her father, through his end of life illness.

Despite impressions she had of a ‘mysterious’, ‘scary’ ‘asylum’, she shared her reflections on what she describes as a ‘lovely facility’ and her interactions with ‘caring’ staff with whom she developed a very positive relationship. She highlighted the positive impact of the compassionate, non-judgmental approach of staff and how her father was treated as an individual person with the focus on what mattered most to him and his family at the end of his life, rather than the events that led to him being admitted to the State Hospital. Because our staff were ‘genuinely’ interested in ensuring her father was cared for in a person centred way, she is content that she could not have cared for him any better had he been at home.

The Board noted that the experience this patient had when he was transferred to a local Hospice was not as good due to the anxieties and fears by Hospice staff associated with caring for a State Hospital patient. The focus was more on risk management which was perceived by the patient and carer as less caring.  The two services have since met to undertake a de-brief so that we all learn from what happened.

The Board noted that this powerful, positive feedback is being shared widely across the Hospital including a presentations to the Journal Club.

Volunteer Story (December 2018)

One of the State Hospital’s volunteers attended the meeting to share narratives from Volunteer Visitors and patients who receive visits from this group. The Clinical Outcomes ‘Relationships’ indicator captures data about the number of State Hospital patients who receive no visits. This information prompts Clinical Teams to submit referrals for patients who wish to receive visits and has led to an additional five patients receiving visits during the last twelve months. As a result, there has been a 50% increase in referrals received, compared to 2017, and an additional four Volunteer Visitors have been recruited to meet this need. Feedback from patients and volunteers demonstrate the value of this service and highlighted the importance of supporting patients to engage with the wider community.

Patient Story – Patient Partnership Group River Journey: Ebb and Flow (April 2018)

Feedback from the Patient Partnership Group (PPG) in the form of creative medium was presented, enabling all group members to contribute to the process. PPG chose to discuss their experience of care and treatment within the State Hospital in terms of enablers and barriers to the recovery journey: “What Floats our Boat”. Based on Japanese Occupational Therapy Kawa River Model:

• Large boulders are seen by patients as the most significant obstacles they experience in terms of supporting the recovery journey.
• Smaller boulders are significant in terms of impeding progress.
• Pebbles represent issues which are not common to every patient but cause issues with the progress of the boat for some.
• The boats reflect experiences which patients have identified as enablers.

Themes emerging from PPG discussion during development of the river:

• Clinical service delivery model:  inconsistencies, specifically around unfamiliar staff in relation to an understanding of individual patient need, concerns around the grouping of patients in relation to very different stages of recovery, impacting on staff’s ability to deliver person-centred care, issues in relation to placement closures.

• Environment: lack of space in the day rooms as a result of number of patients with additional staff support, preference therefore to spend larger amount of time alone in the bedroom area, impacting on spontaneous opportunities to engage in activity.

• Patients feel we’re asking ‘what matters’ to them however not ‘listening’.

• A feeling of losing touch with the ‘outside world’ as a result of being ‘left behind’ with technology.

• Benefits derived from receiving visits and engaging in social events as an element of hope of a return to ‘normal life’.

• Recognition of the value of volunteer input, as a group of people who ‘don’t know about our past life’.

• Importance of experiencing some form of ‘progression’ (which looks different for individual patients) at each six month Care Programme Approach (CPA) review.
• Reflections about what ‘good staff’ are – caring, compassionate, and approachable.
• Unsurprisingly, a few references to ‘food’ – recognition that the meals are good and OT cooking sessions are sought after.

The Board noted that there was no significance to where the boats were placed, and that all the themes in the boats were seen as enablers by our patients.  It was agreed that a report be presented at a forthcoming meeting relating to what we are doing to address the issues identified by the boulders.