Patient stories: 2020

Jen’s Story – A Family Perspective

After our many experiences of the NHS throughout my Mother’s 91 years, I wanted to highlight the wonderful level of care that she received at Bridport Community hospital, and the reasons why I felt that care was vastly better than any other NHS facility that we have visited over the years.

In November 2019, my mother was now very frail, had dementia and could hardly see. After a big fall, she was taken to the local District General Hospital and, due to lack of beds, was on the acute ward for a couple of weeks, then moved onto Bridport Community Hospital in December 2019.

Whilst at the local District General Hospital there were issues around illegible handwriting and a lost “This is Me” document which caused us some concern and lost time with my mother. I will reflect on this at the end of my summary of the care she received.

When I arrived at Bridport Hospital, I was greeted by a senior member of staff who was friendly, kind and approachable.  She invited me into a side room, made me a drink and sat me down asking me to tell her all about Mum and her needs.  It was clear from the start that they were treating the family and not just the patient at Bridport.  She also asked me to complete another ‘This is Me’ document, as the previous one had been lost whilst in transit from the local District General Hospital.  However, this time I was permitted to complete my documents electronically and email it back to her.  She then ensured this emailed version was shared with all staff who would be involved in Mum’s care.  Whilst it was frustrating to have to spend more time filling in forms when I could have been spending that valuable time with Mum - and especially after having to fill in the document at the local District General Hospital, which was subsequently lost - I was encouraged by this one being electronic.

They then did a handover of staff really thoroughly, giving all information about Mum accurately.  This meant I didn’t have to keep repeating myself and also gave me confidence in Mum’s care.  I also noticed the mood of the team was very positive and motivated, with it being very clear from the start that there was strong leadership on the ward.  The staff always had a smile on their face and nothing was too much trouble for them.  As they knew I came from Reading, they allowed me to come in earlier than the visiting hours and they made me feel really at home; telling me I could make myself a cup of tea whenever I wanted and just generally making me feel very much part of the team caring for Mum.

Mum remained in Bridport Community Hospital for a further 3 weeks, before she moved to a Care Home.  During those 3 weeks, we could not have asked for better care.  The communication across the whole team was excellent and I felt all staff members were encouraging and helpful to Mum at all times.  The food was wonderful and the physiotherapy staff tried their hardest to get Mum up and walking for as long as they could (in a kind, gentle manner) until it became apparent that Mum’s care had sadly become palliative and rehabilitation wasn’t going to be possible.

The doctor at Bridport was also very knowledgeable and professional, but had such a manner that you felt she was approachable and easy to discuss matters with.  This made a big difference to our experience of Mum’s care.

One memorable event at Bridport was when the staff organised Christmas songs to entertain patients on the ward. The nurses took the patients in to hear the singing, but sadly Mum was unable to get herself in there as she was very unwell by this stage. So the nurses went out of their way to move Mum into the room (still in her bed) so she could hear this singing and be part of the experience.  Everyone was smiling and laughing and the mood was so warm and happy – I keep thinking what a lovely thing it was of them to do for us.  They went to huge amounts of effort to make sure this could happen, with four of them moving Mum’s bed and making sure she could be there. It is a really lovely memory.

Sadly, Mum passed away in the Care Home she was moved into after leaving Bridport Hospital, but the care and compassion we both received at Bridport was very positive and I wanted to say thank you to all of the team there for that.  It is very clear that the strong team understood the importance of looking after the family as well as the patient.

Can I just say, in this time of crisis, that I felt that every individual in both hospitals were giving ‘their all’, and we could not ask for anymore from them. It’s just the structure that surrounds these wonderful individuals that struck me, so I wanted to point out areas that could be improved for everyone’s benefit.

Summary of care and suggested areas of improvement

The areas that came across that were different at Bridport were:

·         Leadership, staff morale, teamwork and communication

·         Attentiveness to the family, not just to the patient

·         Attention to not only medical needs, but also social & mental needs

I also wanted to highlight our experience, as a family, of an area that could be improved, which would benefit all the NHS facilities and give massive benefits to staff, patients, family experience, and, more importantly, patient outcomes. If paper-based processes were automated using simple electronic forms, so many problems that I have highlighted could be solved, and huge benefits realised. And, with the added crisis that we find ourselves in, with fear of infection and the need for accurate information, there is a massive need to cut out paper & hand-written inaccuracies. The need for the NHS to put simple e-forms in place that streamline process & remove inaccuracies could not be more paramount.

Feedback from Bridport Hospital Matron, Ellen Holmes

This really lovely story is fantastic to hear and is testament to each of the amazing team members at Bridport, who work together so well to support not just the patients in our care but their families too.

We had received a Thankyou card from this family member soon after the patient’s discharge – but it is really special to hear their full account of the patients stay from the family member’s perspective.

We will also of course take on board the area of improvement highlighted and work together with our wider NHS colleagues to improve this.

Oonagh’s Story

Oonagh is 25 years old and an intelligent young lady who was diagnosed with Asperger’s.  In 2010 Oonagh was experiencing high levels of anxiety with leaving the house and this stemmed from her pathological demand avoidance that she suffered from. This is a brain development disorder which is a sub-type of autism spectrum disorder. A condition that involves a greater refusal to do a task, asked by another person; even if the activity is something the individual would normally like to do. This disorder was not recognised in Oonagh’s patient notes and would often be noted as ‘lack of motivation’. This disorder hugely impacted Oonagh’s life.

Oonagh also faced difficulties with self-perception, compulsive daily behaviours and suicidal thoughts.  Shelia (her mother) reached out to agencies that could potentially offer Oonagh support. Unfortunately nothing came to fruition as they did not offer what Oonagh needed. Oonagh and her mother felt let down as also a local school were unable to offer support. Oonagh needed support with developing life skills as she relied on her mother for a lot of practical support. These issues stemmed from Oonagh Asperger’s and eventually impacted her mental health. Oonagh’s mother found it difficult to identify recourses for ASD teenagers, especially for girls. Shelia spent a year fighting for support and benefits etc for her daughter but has spent 7 years fighting for what mental health support she has needed which is ongoing. Fighting for what her daughter needed also impacted on Sheila’s mental health and wellbeing. Eventually in 2010 Oonagh received funding to attend a specialist college and further education. The college offered life skills and training for people with Asperger’s.

During her time at Farleigh College she lived in the residential accommodation and when she left college in 2013 she moved back in with her parents. Oonagh was relying solely on her mother, who had given up work years ago to act as a carer for her daughter and was providing all required input on her own. Oonagh’s mother knew her daughter needed therapy mainly for her pathological demand avoidance and her high anxiety to leave the home.

It was highlighted in August 2015 that Oonagh needed some therapy for her deterioration in her mental health. She was finding social interactions difficult which led to socially isolating herself from the anxiety and fatigue from interactions. This took a toll on Oonagh and her mother as she would rely on her mother to facilitate her daily life. Oonagh was waiting for accommodation for supportive living and this would help her to become more independent with some support from carers coming in occasionally. When she turned 19 she was discharged from CAMHS and was referred to the Adult Mental Health Team. Oonagh accessed the CMHT service in 2014 for her demand avoidance and was discharged 3 months later as she was assessed and it was decided that it was in her best interest to continue with the Mental Health and Social Inclusion Team.  CMHT met with Oonagh again in 2015 and she was again subsequently discharged and agreed that she would benefit from seeing Steps to Wellbeing.

A meeting was organised between Oonagh, her mother and CMHT to address some issues that they were experiencing with the lack of service provision for Oonagh. It was explained that the CMHT service provided treatment for individuals that met their service criteria. CMHT accept referrals for service users experiencing high levels of mental health issues; such as depression, anxiety, and psychosis and complex/severe personality disorder. For Oonagh to receive treatment from the CMHT she needed to meet this criteria. Oonagh's mother felt that there was a lack of national provision for service users such as Oonagh that have Asperger’s but also experience high levels of anxiety and depression.

Oonagh received input from Steps to Wellbeing. However, they were unable to provide her with the length of therapy for her degree of difficulties. They were only able to offer six sessions. Oonagh needed long term therapy for her anxiety, depression, her sleep disorder and pathological demand avoidance. Oonagh was offered CBT for her anxiety but she also needed counselling.  However, this was not possible as Oonagh was receiving CBT. She was also told she was unable to come back to the service for the same issue. An aspect of the CBT meant that Oonagh needed to do homework but due to her autism she was unable to do this. Onnagh’s case was too complex for Steps to Wellbeing and she was told she needed to go back to CMHT. Onnagh and her mother were continually bounced back and forth between CMHT and Steps to Wellbeing.

Shelia has spent a considerable amount of time writing, emailing, meeting and reaching out for help and support for her daughter but to no avail. Even the National Autistic Society were unable to help. Sheila also reached out to the NHS asking for training to support her daughter but she did not get a response. Sheila decided that all she could do was make sure that Oonagh doesn’t kill herself and that is all she could do.

Shelia attended a meeting for Carers Advocate Service which is a charity that works closely with social services and they try to support carers and get their voices heard.  The charity agreed that they would help Shelia. The charity wrote a letter to the Chief Executive of Dorset Health Care but no response was received. Eventually, a meeting was arranged with the manager of CMHT with Shelia and the carers advocate. Shelia felt this meeting was just to try and make her feel better and come to terms with not being able to move things forward for her daughter. There were four other meetings after this; every meeting more people were involved and still no actions. There was also lots of communication with emails and letters between these meetings and Shelia felt they were getting nowhere. Shelia made it clear she wanted something to change and she was not giving up.  Finally, a big meeting was arranged with CMHT, Steps to Wellbeing and the Complaints Team.

This meeting was the final breakthrough for Shelia and her daughter. Shelia’s first thought at the beginning of the meeting was that still noting was going to change. However, the Lead Clinician of Steps to Wellbeing expressed that they did have the means to help Oonagh and could not understand why she hadn’t been helped before. The adaptions that Oonagh needed were easy and would not come to any more cost. The adaptions were clear and it was agreed that Steps to Wellbeing would give treatment to Oonagh with adaptations.

ADAPTIONS

During CBT you learn strategies in the sessions and then you go home to learn these. Oonagh cannot do this because of her autism. It was agreed that she can do her homework in the sessions. There was also a need for Oonagh to have more sessions and to be able to come back for more if needed. In the past, she could have 6 sessions of CBT and could not come back unless it was for a different reason. Shelia made it clear she cannot address all her issues in 6 sessions as Oonagh issues are too complex. In this meeting, it was agreed that Oonagh would have between 10-20 sessions and that she could return like any other person.  Shelia felt that the service allowed access to able-bodied people but denying access to disabled people. It was agreed that she could have more sessions and she could come back for the same issues. Oonagh was also denied counselling because she was given CBT for her anxiety. Shelia explained that anxiety was just one of her issues and she needs counselling as well to address other difficulties. It was agreed that Oonagh could have both of these and could swap between CBT and counselling. 

Oonagh has had her 20 sessions and is now having a 6-month break. She will go back again in December 2019 for another set of sessions dependant on how many she needs. These adaptions were a breakthrough for her and she is making incredible progress in her life. She now lives in supportive living.

Shelia explains that this story is not the only one and there are lots of other families with the same story and these are only in Bournemouth that she knows of. Shelia is passionate that these adaptions should not just be for Oonagh but should be for anyone like Oonagh. Shelia feels that services should be more aware of the Equality Act so that services can be accessible for everybody and those guidelines are only treated as guidelines that can be adapted for people that need them adapted. Shelia feels that children with autism are being discriminated against and this needs to change. A policy needs to be in place so that individuals like Oonagh are not stuck in the same position. Shelia would like to see changes in the guidelines that were changed with Steps to Wellbeing in ‘writing’ so that these can be used across the board with other adults with Asperger’s experiencing mental health problems.

Feedback from Steps to Wellbeing

(Response from Morad Margoum, Senior Service Lead, Steps to Wellbeing)

Oonagh’s experience is unfortunately indicative of a gap which presents itself from the transitions which occur between young people and adult services. Moreover, it is indicative of the difficulties those with Asperger’s find themselves. Unfortunately services are not commissioned in a way that meets her specific needs. Historically within the context of ASD (Asperger’s Spectrum Disorder) presentations, the argument was that this presentation was a social problem rather than a health one.

In Oonagh’s case however, I came into it after a significant numbers of misunderstandings between the wider trust (CMHT), the service, Oonagh and her mother (Sheila). The misunderstanding was that we were being asked to provide a counselling intervention for social anxiety (there is no evidence to support this in the NICE guidance and we are an evidence based commissioned service), Oonagh had previously undertaken interventions within her schooling which was focused upon this approach. The S2W service, at present works with individuals who have ASD presentations and there are adaptations available. As a result, determining that the service would take 51% of the responsibility and we trialled CBT approach with the adaptations in mind, I made the offer of seeing Oonagh within S2W and submitted an agreement between her and the service which is recorded in the notes for continuity rather than depending upon relationships.

Whilst the service is able to make these adaptations, the issue is that the service is covering a gap in provision, a review of the commissioning arrangements and remit of the service would be required for the larger scale changes that Mrs Fox is requesting, moreover, this is likely to have an impact nationally. Through the transformation of primary care mental health in the area however, I believe that it might be possible to bridge this gap with the available services.