Meeting the Needs of Patients with Huntingdon's Disease

MEETING THE NEEDS OF PATIENTS WITH HUNTINGTON’S DISEASE St Peter’s Hospital is a specialised centre for the assessment, treatment and rehabilitation of individuals with a wide range of complex neurodegenerative and organic disorders, including Huntington’s Disease (HD).

The clinical expertise of our multidisciplinary team (MDT) makes us ideally suited to deliver high quality, evidence based therapies to

those living with HD — helping us to provide the best possible care with the aim of optimising our patients’ independence and quality of life.

St Peter’s Hospital is part of the established Ludlow Street Healthcare group

OUR CARE PATHWAYS Located on the outskirts of Newport, St Peter’s Hospital offers 33 beds split into single gender units and, since our launch in 2013, our safe and friendly environment has provided specialist support to HD patients at every stage of their journey through our three clearly defined care pathways:

HUNTINGTON’S DISEASE

Our team — who receive training from the Huntington’s Disease Association — understands that HD is an illness that affects both the patient and their family. We regularly co-ordinate family meetings where we aim to raise awareness about HD and explain how we manage the complications of the illness, whilst providing an opportunity for families to share their experiences of dealing with a condition for which there is currently no cure.

Assessment & Treatment Pathway (0 – 16 Weeks) Specialist Palliative Care Pathway

Recovery & Wellbeing Pathway

Community / Home Setting

OUR EXPERTISE IN CARING FOR THE UNIQUE NEEDS OF PATIENTS WITH HD OUR ENVIRONMENT

OUR SPECIALISED MDT

Our centre incorporates dementia friendly design features (as advised by the DSDC, Stirling University), including level flooring, appropriate lighting and a range of signs and communication boards to encourage orientation — and every patient’s room has a uniquely designed front door and memory box.

Our specialised MDT includes psychiatrists and psychologists skilled in assessing and treating psychiatric comorbidities that affect people with HD.

Gender specific units afford dignity and reduce risk for patients with sexually inappropriate or disinhibited behaviour.

Our mental health and general nurses are able to meet the psychiatric and physical health needs of people with HD.

At St Peter’s Hospital, we offer both pharmacological and non-pharmacological interventions that focus on addressing the challenging behaviour of patients with HD.

OUR FACILITIES We have a dedicated therapy and activities wing offering reminiscence therapy, pet therapy, a sensory room, music therapy, arts and craft groups, a nail bar, gentlemen’s and ladies groups, and more.

MOBILITY AND FUNCTIONAL ABILITY

Patients have access to level, landscaped gardens providing a variety of sensory experiences and opportunities to engage in gardening groups and outdoor activities e.g. exercise and pet therapy.

Our inhouse physiotherapist helps maintain patients’ mobility and responds to the increased risk of falls typical with HD.

NUTRITION

Our physiotherapy and occupational therapy teams ensure our HD patients have the tailored equipment that promotes their independence e.g. specialist beds, chairs, walking aids and cutlery.

Our onsite speech and language therapist is available to respond to any changes in patients’ swallow reflex.

OUR LOCATION

Our kitchen delivers nutritionally balanced, textured modified meals catering to patients at every stage of Huntington’s Disease.

Our semi-rural location — and fleet of specialist adapted vehicles — allows patients to engage in a range of safe and risk assessed communitybased therapeutics and leisure activities.

Our dietician can prescribe speciality food supplements, make dietary modifications and meet the needs of those on PEG feeding.

Our nursing team is trained in managing PEG feeds and to recognise the signs and symptoms of impaired swallow and aspiration.

Working in partnership with our commissioners, we aim for positive clinical outcomes and a progression in our patient’s care pathway towards less restriction and greater independence.

LIVING WITH HUNTINGTON’S DISEASE CHRIS’S* JOURNEY Diagnosed with Huntington’s Disease, 49 year old Chris was being cared for in a specialist nursing home when she presented with increased agitation and aggression and was detained under the Mental Health Act. Chris was referred to St Peter’s Hospital where she was agitated and aggressive, initially carrying out a number of assaults on staff. She was given 2:1 levels of nursing support to manage the risk she posed to others. Chris also refused to eat a healthy diet.

HOW WE MET CHRIS’S NEEDS Chris was assessed by our multidisciplinary team, before her medication was titrated to alleviate her anxiety and manage her impulsivity and aggression. We completed neuropsychological testing and behavioural analysis to develop a positive behaviour support plan for Chris. Our dietitian and our speech and language therapist also collaborated to improve Chris’s diet and communication.

THE OUTCOMES FOR CHRIS AND HER COMMISSIONERS The multidisciplinary team worked to improve Chris’s mental and physical health and, during her time on our 16 week Assessment and Treatment Pathway, she was managed without the use of enhanced observations.

As the complexity of her condition requires careful management of her mental and physical health needs, Chris remains with us and is now actively engaged with meaningful activity that focuses on promoting her independence. We are also working to support her in adapting her way of life to meet her deteriorating mobility and cognitive function.

Chris’s compliance with all aspects of her care and treatment has substantially improved during her time with us. Our team is now working closely with Chris’s commissioners, alongside the community Huntington’s Disease nurse practitioner, to find her an appropriate step down placement.

Chris has made significant progress since arriving at St Peter’s – so much so, that she recently joined our interview panel to help us select candidates for the role of psychologist.

This has had a tremendous impact on her confidence.

Dr. Kumi Pillay MBChB MRCPsych, Psychiatrist, St Peter’s Hospital

*patient’s name changed to protect identity.

PROVIDING SPECIALIST CARE AND TREATMENT, OPTIMISING LIFE BEYOND ILLNESS

HOW TO REFER Please contact our Referral Co-ordinator on 029 2039 4410 or referrals@lshealthcare.co.uk St Peter’s Hospital, Chepstow Road, Langstone, Newport, NP18 2AA

www.lshealthcare.co.uk www.saintpetershospital.co.uk