“Ged Jennings is an Acute Learning Disability Liaison Nurse at the Liverpool University Hospital and is currently undertaking his MSc in Clinical Research at Edge Hill University.

Ged has worked in a wide variety of roles and settings in the health and social care sector for over 19 years, including acute hospitals, specialist inpatient wards, day services and providing community support for people with a learning disability, autism or both. 

Ged is extremely passionate about learning disability awareness training and is a strong advocate for the people and families he supports. He also has a desire to ensure that hospital staff are aware of and supported to make reasonable adjustments so that the people he supports experience positive outcomes in the care they receive.

Ged was tremendously proud to be part of the Acute Learning Disability Liaison Team that were shortlisted for an RCNi award in 2018 and who eventually went on to win the ‘Team Of The Year’ Award in 2019. Ged is also a Florence Nightingale Foundation Nurse and continues to be passionate about raising the profile of the Learning Disability Nursing whilst also looking to inspire future learning disability nurses into the profession.

With regards to the blog you’re about to read, Ged felt that there always seemed to be confusion about what he did in his role and trying to explain the complexities of acute liaison to people, families and other staff members ended up confusing them more! To aid a better understanding of the role Ged decided to complete a ‘week in the life’ diary which illustrates the ups and downs, the challenges and the victories of this ever changing role.”

“All patient and carer names have been anonymised as per Nursing Midwifery Council’s (NMC) ‘the code’ (2015). Furthermore, I requested permission to share the edited stories from all patients/carers as per the Mental Capacity Act (2005)”

People do not always understand the role of a registered nurse learning disabilities (RNLD) (Wilson, 2014). "Are you a mental health nurse?" "So are you a carer then"? "L.D. Nurse? What's an elderly nurse?" are personal examples that have been said to me. Some of the replies learning disability nurses offer back are often increase ambiguity "yes we are registered nurses, we work everywhere...we do everything". Whilst this is true, real examples of our role must be highlighted and shared to increase awareness of what our roles entail, and how they differ in various settings or client groups. Although I was not aware of it before qualifying, an unofficial addition to the RNLD role is to make people recognise that we exist, and offer them an explanation of the work that we do. The cohort of students that I studied with (April 2013 at Edge Hill University) kindly inform me of their changing job roles post qualification. I use this valuable information when providing teaching sessions at local universities.

I am proud to be a RNLD, and wanted to share a snapshot week highlighting the role of an ‘acute learning disabilities liaison nurse’. I am employed alongside another RNLD, within the wider safeguarding team, at the Royal Liverpool and Broadgreen University Hospital Trust (RLBUHT), a city centre general hospital. It is known that patients with learning disabilities receive poorer care in acute settings than the general population (Mencap 2007; Michael, 2008; Mencap 2012; Heslop et al., 2013). Post Brexit, there are less people are applying for learning disability nursing (Royal Collage of Nursing, 2018). Additionally, there has been 40% drop in applicants for learning disability nursing in the last 8 years (Council of Deans of Health, 2017). Worryingly, some universities are actually stopping teaching the course (Council of Deans of Health, 2017).

My hope is that the following diary will entice people to study learning disability nursing, and help support some of the most vulnerable people in our society (Public Health England, 2015)

Monday

As our service covers only a working week, a typical Monday morning gives the liaison nurse an opportunity to catch up with referrals and emails from over the weekend. The aim is to give the nurses time to see who has been admitted and who has been discharged from the wards. This will typically generate a list of patients that to visit that day. This will include our caseload, and others that may need criteria assessment to indicate if they are included in our service.

However, on Monday morning the computer servers were down and a potential frustrating morning beckoned. One of the ward managers contacted us as ‘Steve’ had self-harmed yesterday, cutting his arm with a blade. She was anxious, and wanted our support. Steve has Asperger’s Syndrome and we have been working closely over the previous week of his admission. I have tried to cultivate an honest therapeutic relationship with Steve who feels that there is limited understanding of his condition in a general hospital. We discussed implementing some positive coping strategies instead of the self-harm, and we agreed that using a quiet space on the ward to pace around may benefit him. As part of a wider multi-disciplinary approach, contact was made with Steve’s community Asperger Specialist, who has kindly agreed to support me on a joint visit later in the afternoon.

Upon return to our office, a message has been presented to me that ‘Tim’ is in the Emergency Department (ED). Tim is a non-verbal gentleman on the autistic spectrum, and was recently a patient for over 180 days. A grave concern was that a lengthy admission for Tim would deskill and institutionalise him again. I was made aware from the consultant that Tim had a fall, possibly brought on from increased seizure activity. My aim was a rapid safe discharge. I immediately had conversations with medical staff, physiotherapists, a discharge manager, social worker, and of course Tim’s care coordinator with the aim of arranging a streamlined discharge plan. Crucially, after the X-ray results, Tim was safely discharged home. This all happened within 3 hours of entering our ED. There was a sense of a job well done, making sure he was home and safe.

Once the computer came back online, the opportunity arose to work through the weekends’ worth of emails. I organised a list of all of our patients for the day. This is one of the tasks the liaison nurse must complete every day. In an ideal world this information would be automatically generated, but we must navigate within the various systems to get the information.

Our team motto is ‘every patient, every day’, and over the following hours I visited all of our patients. This often can range from a short visit to ascertain their physical and mental wellbeing, to longer bespoke support if necessary. A mum of a regular attender ‘Arnie’ forgot to bring her mobile phone charger, so as a 'reasonable adjustment' (The Equality Act, 2010) I procured her one so she could contact her son for extra support for Arnie. He is a great example of creating a long term support plan, and therapeutic relationship. In 2017, Arnie was underweight and had concerns around poor nutrition, poor dental hygiene amongst other multi-morbidities. Our service has worked closely with Arnie to access special care dentistry as an outpatient, and liaised with the wider service to support this admission for a colonoscopy. Currently, Arnie is eating well and has gained 3 stone in 12 months. Arnie told me that I was the “red power ranger”, and he was the “blue”. I made him fully aware that I am always the blue power ranger!

In the afternoon, the Asperger’s specialist arrived. We listened to Steve’s concerns, devising an action plan. This was shared with Steve in a written format. Part of our plan included giving Steve 30 minute’s daily with myself, to give the opportunity for him to talk through concerns, with the ultimate aim of reducing his deliberate self-harm. Research shows talking therapies can help reduce self-harm for people with autism (NICE, 2004)

Tuesday

I arrived early to prepare for some bespoke training I was providing to 20 new Occupational Therapists (OT) at 9am. The primary focus of was highlighting the relationship between an OT and patients with learning disabilities. The session lasted an hour and seemed to be well received from the audience, with good interaction and email feedback. Immediately afterwards, I had to provide our ‘foundation level learning disability’ training to staff receiving ‘Level 3 Safeguarding’ training. This training was also received positively, however afterwards I felt mentally drained from the sessions. The focus was the overuse of abbreviations within hospitals. We discussed the effect this has on patients with cognitive impairment, and in turn can lead to missed appointments, and unnecessary visits to emergency department. This is particularly important as RLBUHT is due to move into a new City Centre hospital in the near future, and an awareness of improved accessible information may be extremely beneficial to patients with learning disabilities. I am aware of the importance of making the staff aware of the needs of people with learning disabilities, autism or both, and our service has trained nearly 2800 staff, students and volunteers since 2016.

I had a 20 minute telephone conversation with a worried mum of an autistic young man who is currently transitioning from children’s services into adult. She was concerned over some of the challenges he has faced. Mrs Smith told me that she felt reassured that she could contact us directly. I arranged some desensitisation sessions where her son ‘Mark’ can walk through the gastrointestinal department at a time and date of their indication. Nicolaidis, Kripke and Raymaker (2014) indicate people with autism improve hospital experience with prior department visits, and part of our role is facilitating such visits. We discussed the design of a comprehensive care plan, including a completed ‘health passport’. Mrs Smith seemed calmer at the end of the end of the conversation, and will be back in touch with a suitable date for the visit.

Another daily task within our role, (fitting in with NHS England (2018) ‘ask listen do’) is making a post discharge telephone contact. We discover how a person’s hospital admission was at, and the results will inform clinical areas to make amendments if any issues arise. I spoke to ‘Jack’ who was a patient last week for a transposition of fistula. Jack’s feedback was his “treatment was superb”, and felt the care was excellent. Furthermore, he believes that since being given a health passport he has noticed an improvement in how he has been supported in hospital. I have documented this, and the information will be fed through the correct channels internally. Calls like this show what we are doing is making differences with patient stay.

Steve was using the coping strategy of pacing around a quiet space when I visited him in the afternoon. He made me aware that he has been writing letters all night, and again this is another way for him to cope in this environment. However, Steve also confessed that he inserted a comb into his cut on the previous evening. He was increasingly anxious as he was supposed to be viewing his next potential property today, but it will not happen as his blood sugars and ketone levels are deranged. Steve’s focus was that if he did not go today he would not get a further chance to visit the house. This in turn increased his anxieties. I made him aware that once he is well he can revisit the property, and to remain positive.

Arnie’s colonoscopy and GA were successful, and he was discharged. Mum and I had a conversation, and I offered ongoing support for any further admissions or appointments at RLBUHT.

The Team received three new patient referrals, so I undertook our ‘reasonable adjustment risk assessment’ on two of them. An autistic patient declined input from our service as he did not want to be supported by a learning disability nurse. The two other patients’ needs varied greatly, and therefore our involvement will be different in both cases. One had excellent communication and had capacity (Mental Capacity Act, 2005) but has a history of verbal aggression. The other cannot verbally communicate and has 24 hours carer’s support whilst in our hospital.

Wednesday

The RLBUHT is over various hospital sites, and one of the elements of our role is to visit our sister hospital at Broadgreen, 4 miles away. I travelled on the staff bus to see our two patients. 'Colin' is a patient with Asperger’s Syndrome who is due to be discharged next few days. He aims to live his dream by becoming a contestant on ITV’s 'The Chase'. The second patient, 'Lomax' is on the rehabilitation unit, and will be for a prolonged period. From my own admission I do not visit Broadgreen Hospital as much as I should. The journey time, parking, and greater patient numbers at our main site signify I do not know that site as well as the main hospital in the city centre.

Upon return to the Royal site, Steve and I met and discussed his continued self-harming. The clinical notes indicated Steve had cut himself again the previous evening, using his fingers to reopen the wound. I made him aware that having diabetes, and an increased risk of infection, the healing process will take longer, thus slowing down his discharge. I gave Steve a linear process map explaining the consequences of his self-harm. He informed me that this was "enlightening" and stated that he would not self-harm that evening. I informed him that regardless I will visit him every working day per our agreement. Providing non-judgmental consistency is needed to aid and support recovery (Dixon, Holoshitz and Nossel, 2016)

After visiting the patients on the wards, I had to provide training to the Trustwide volunteers. Our service works closely with the volunteer team. I tailored training to them in a less formal, humorous manner. The session aim was helping them understand what a patient with learning disabilities may require from a volunteer, and how their bedside activities and therapies have aided our patients previously, including relevant case studies.

Positively, I have received two emails from the OT training on Monday morning, offering to become ‘Learning Disability Champions’ within the hospital. There are now over 70 champions, and the engagement is growing consistently. I will email them back to send out a contract and inform them of the next session, and what is expected from them. Our latest drive is for each champion to have a one page profile, and each clinical area to have learning disability board placed in a clinical area. I feel a sense of extreme pride when organising, communicating and disseminating information to the champions. I emailed the champions group two new articles relating to poor care of people with learning disabilities in hospitals, and asked for their feedback.

I received a telephone call from the local assessment and treatment unit to inform me that one of their patients who is under section 3 of the Mental Health Act (2007) will have to access our hospital in the near future for an appointment. Similar to previous cases the liaison team must work to provide a tailored, streamlined visit to the hospital. Plans, including departmental challenges, safe routes through the ED, parking and staffing must be managed. The ultimate aim is to keep the patient, staff and wider hospital population safe throughout.

Thursday

On Tuesday’s and Thursday’s our regular attender dialysis patients attend the dialysis unit. ‘William’ is a nonverbal autistic gentleman who needs full support from his dad, and our working relationship has included accessing other hospitals and working with community nurses in the local area. On the other hand, Harry can often be aggressive and our role has been training the staff in changing their communication techniques with him. Utilising a consistent approach, devoid of ‘banter’ has had a great effect on his behaviour. Training staff to reduce communication and being more direct was a challenge, but results have shown that a holistic person centred approach can be achieved.

Jack (who had provided excellent feedback on the post discharge contact on Tuesday) was readmitted last night with blood clots. He looked upset and disillusioned. I revisited him to start our process of risk assessing and offering specialist support for his admission again. It is a strange feeling when a patient is readmitted. Partly, we have a good working relationship and our team can help whilst the patient is back in, but also they need further treatment and are unwell. I was sad to see him back, and wished him a speedy recovery.

Steve made me aware that he did not self-harm last night and "the thought never crossed my mind". He thanked me for the linear care plan we devised together yesterday. He now has a computer to type letters, a quiet area for him to pace, and some books to read. Steve's mood and manner were the most settled that I have seen since he arrived. This is an example of where a learning disability nurse reflects and amends their approach regularly to help a patient at crisis. I felt a sense of pride that I had made a difference to this gentleman.

‘Michael’ is a regular attender, who experienced poor care at a different hospital. he had an appointment to see a gastrointestinal consultant in the late afternoon. I was invited to support both Michael and his dad. Upon discussion, I was made aware of a plan from the phlebotomy department where Michael would hold red, orange and green lidded blood pots. Michael pointing to the green lid would indicate that he was ready to have bloods taken. This gave me an idea that he could potentially utilise the traffic light picture on the front of his ‘health passport’ as his sign of consent to any medical intervention. Dad initially viewed this as a great idea to promote Michael’s independence and choice. However, Michael’s body language and facial expression changed and he looked cautious and upset. Dad asked him why, and Michael thought that the traffic lights meant he now had to get his bloods taken, and no preparation had been put in place for this intervention. The resulting consultation shown Michael as far less engaging, possibly worried or concerned of the traffic light idea. Personally, I went from the elation of Michael ceasing his self-harm, to the low of Michael becoming disengaged within a two hour period. A rollercoaster of emotion, and I was upset the whole evening.

Friday

The day started with back office administration. The team had 25 referrals this week, and I had completed them all. The patient spreadsheet was updated, all of our discharge letters were sent to patients, and I completed two post discharge telephone calls.

The first call was excellent feedback of the hospital care, and our team. The following was the total opposite. Since the inception of the contact 170 calls have been made, and this was the worst one. The patient mary lacks capacity, so I spoke to her mum. Mum informed me Mary came home in a state that was not acceptable, and did not look well enough to be discharged. Mum told me that there was no pre-discharge conversation, and her comments of “people like Mary are complex so hospitals never get it right, I am used to it”, emotionally dissected me. The exact reason why I am in this job is to change that thought process. I made Mary’s mum aware that I will highlight this issue and somebody will contact him back. I informed her that “people like” her daughter need the voice of a learning disability nurse. I personally felt I let her down. My final visit to Paul of the week came after he returned from a visit from a potential property.

Steve visited the property in the morning, and he told me that he liked it. Steve was hopeful that they will accept him. For the second day, Stevel did not self-harm, although he stated "I had the urge to". Crucially, he coped without doing it. I drew Steve a diagram indicating a linear improvement in his physical health, mental well-being and social situation over the last week. I made him aware that even though he may focus on negatives in situations, things are improving for him. He told me that he understood this, but seemed to be focusing on the negativity of the ward, rather than the obvious positives.

The final conversation of my working week was Steve telling me that he "probably" will harm himself over the weekend. I hope I do not walk back into another crisis on Monday morning.