WHO AM I? BRIAN EVANS CLINICAL NURSE SPECIALIST FOR LEARNING DISABILITIES UNIVERSITY HOSPITALS OF MORECAMBE BAY NHS FOUNDATION TRUST

FACILITATING GOOD QUALITY PERSON-CENTRED CARE REFERRAL- COMMUNICATE- PLAN- ACTION-

Deborah (not her real name) LD, PKU, ASD, complex needs. CASE STUDY REFERRAL Deborah (not her real name) LD, PKU, ASD, complex needs.

REASON FOR REFERRAL Telephone call from Care Provider Manager and Community Learning Disability Nurse to report Deborah has a skin lesion/tag on her left buttock (size of a saucer, black; necrotic with root into buttock). A best interest decision was made for the care provider to take a photograph to share with Clinicians as it was agreed although Deborah would allow this it doesn’t constitute consent because she didn’t understand the rationale for the photo.

Deborah (not her real name) LD, PKU, ASD, complex needs. CASE STUDY REFERRAL INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs.

INITIAL INTERVENTION Consulted with Lead G.P. for Dermatology for advice and input. Advised to consultant Deborah’s G.P. to establish their opinion regarding assessment and treatment. It was agreed due to Deborah’s complex needs in relation to her Learning Disability and Autistic Spectrum Disorder treatment could not be facilitated in Community and therefore plan for hospital admission.

Deborah (not her real name) LD, PKU, ASD, complex needs. CASE STUDY REFERRAL INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs. ASSESSMENT CLINICAL MCA (2005)

ASSESSMENT PROCESS Skin tag had dropped off and was sent for Histology. Referral made to Consultant Dermatologist and Surgeon. Capacity Assessment done by Clinical Nurse Specialist for Learning Disability, this assessment indicated Deborah lacked capacity to consent to treatment. Multi-Disciplinary Team meeting organised with ; Clinicians, Carers, Family and Community Learning Disability Nurse to discuss treatment options and consider best interest options (Mental Capacity Act 2005). Deborah was put on 2week wait cancer pathway. Surgeon, Consultant Anaesthetist, Theatre Manager, Dermatologist and Clinical Nurse Specialist for Learning Disability facilitated an evening home visit to meet Deborah and assess the skin tag.

Deborah (not her real name) LD, PKU, ASD, complex needs. CASE STUDY REFERRAL INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs. ASSESSMENT CLINICAL MCA (2005) CARE PLANNING PROCEDURE PROCESS

CARE PLANNING Treatment of options:- 1. Explore the possibility of conducting removal of root under local anaesthetic at G.P. Surgery or local Health Centre. -Discussed at Multi-Disciplinary team review, agreed in theory this is least restrictive however due to Deborah’s complex idiosyncratic behaviours it was felt this had least possibility of success (route, vehicle, accessing health dept.). To conduct the surgical procedure in hospital under General Anaesthetic. -Deborah will not get in a vehicle therefore plan to sedate her in her own home (Heavy Sedation/General Anaesthetic) and transfer to hospital in an ambulance (x2 Consultant Anaesthetists, x3 Theatre Nurse, x2 Paramedics, Ambulance). -Conduct procedure first thing in the morning to reduce anxiety and have minimal impact on Deborah’s daily routine (eg. Fasting and loss of predictability). -Theatre staff will be prepared for surgery as soon as Deborah arrives at hospital. Post surgery return home via Ambulance for recovery at home (General Anaesthetic).

CASE STUDY REFERRAL INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs. ASSESSMENT CLINICAL MCA (2005) CARE PLANNING PROCEDURE PROCESS ADDITIONAL CARE PLANNING?

ADDITIONAL CARE PLANNING The Multi-Disciplinary team , Carers and Family recognised the opportunity to facilitate any further health screening and assessment during the admission because historically medical intervention has proved problematic and distressing for Deborah. Family reported a history of Breast Cancer in the family, previous attempts to access Breast Screening had failed for Deborah, it was agreed in her best interest to request examination in theatre during the planned procedure. Liaised with G.P. and agreed Full Blood Count whilst under General Anaesthetic in Deborah’s best interest (Mental Capacity Act 2005). Dentist consulted about facilitating a check up whist under GA.

CASE STUDY REFERRAL INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs. ASSESSMENT CLINICAL MCA (2005) LEGAL FRAMEWORKS &LEGAL RESPONSIBILITY CARE PLANNING PROCEDURE PROCESS ADDITIONAL CARE PLANNING?

LEGAL FRAMEWORK & LEGAL RESPONSIBILITY -Capacity Assessment (MCA 2005) the 5 fundamental questions; Does Deborah has Impairment of mind/ brain. Is she able to understand the information. Can she retain the information. Is she able to weigh up the information. Can she communicate her decision. Best Interest Principles (MCA 2005) apply as she was deemed to lack capacity; The surgeon is the decision maker. CNS for LD organised a best interest meeting to consult with Multi-Disciplinary Team, Allied Health Professional’s, Family and Carers Considered the least restrictive option. The agreed plan was to transfer Deborah to/from hospital under Heavy Sedation/General Anaesthetic in an ambulance it was felt this was safest and increased the possibility for a success intervention. Other options were discussed but concerns raised by family and Carers that Local Anaesthetic or sedation would increase anxiety, distress and potentially result in manifestation of challenging behaviour.

LEGAL FRAMEWORK Mental Capacity Act 2005, capacity assessment and subsequent Best Interest Principles followed. Deprivation of Liberty Safeguarding (DoLS) Applications made by Deborah’s home and the hospital. Court Of Protection (CoP) consulted by the Trust’s Legal Team and advised admission and intervention was covered under the DoLS authorisation.

CASE STUDY REFERRAL INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs. ASSESSMENT CLINICAL MCA (2005) IMPLEMENTING THE PLAN LEGAL FRAMEWORKS &LEGAL RESPONSIBILITY CARE PLANNING PROCEDURE PROCESS ADDITIONAL CARE PLANNING?

IMPLEMENTING THE PLAN Clinical Nurse Specialist for Learning Disability went to home at 7am on the day of the procedure to co-ordinate the admission. The Ambulance arrived at 7.30am. The Consultant Anaesthetists and theatre team arrived 7.40am. Deborah’s carer woke her up at 8.00am as per normal. The Consultant Anaesthetists and theatre team went into Deborah’s flat 8.05am and with her own staff support anaesthetised Deborah with gas, when under a cannula was put in situ (she has a needle phobia). Once Deborah was stable she was transferred to hospital via blue light ambulance with hospital staff in support, immediately to theatre on arrival. Surgeon and theatre team ready on arrival, all procedures and assessments completed as agreed. Deborah returned home/flat via ambulance. Theatre team stayed with Deborah until she fully recovered. Theatre staff left at @13.40hrs. Deborah continued her daily routine albeit 6 hours late!!

CASE STUDY REFERRAL OUTCOME AND EVALUATION INTERVENTION & INFO GATHERING Deborah (not her real name) LD, PKU, ASD, complex needs. ASSESSMENT CLINICAL MCA (2005) IMPLEMENTING THE PLAN LEGAL FRAMEWORKS &LEGAL RESPONSIBILITY CARE PLANNING PROCEDURE PROCESS ADDITIONAL CARE PLANNING?

OUTCOME AND EVALUATION Deborah had the surgical procedure , she was unaware she had been to hospital and when recovered continued with her daily routine, albeit a 6 hours behind, she had shower and breakfast at 2pm!! Histology results were negative and ruled out any sinister pathology likewise with breast examination, dental check clear. Her home staff team have commenced social story work about going to hospital, getting in vehicles and turning left. Deborah’s family and carers acknowledged how important effective planning was to ensure success, and were delighted with the outcome. Hospital staff have a greater insight into effective planning, reasonable adjustments and the legal process and responsibility.

REFLECTION IN TOTAL THERE WAS 43 PEOPLE INVOLVED IN THE PLANNING, ADMISSION AND TREATMENT PROCESS. EACH PERSON WAS ACCOUNTABLE AND RESPONSIBLE FOR THEIR OWN ROLES BUT WORKED COLLABORATIVELY AS A MDT TO ENSURE THE PATIENT WAS ALWAYS AT THE CENTRE OF THE CARE PLANNING. POTENTIAL BARRIERS WERE OVERCOME BY THE COMMITMENT EACH PERSON EXHIBITED TO ENSURE THIS LADY RECEIVED THE CARE AND TREATMENT SHE WAS ENTITLED TO. WITHIN OUR TRUST THIS CASE HAS SET A BENCHMARK FOR REASONABLE ADJUSTMENTS AND THE HIGH STANDARD OF CARE THAT CAN BE ACHIEVED THROUGH EFFECTIVE PLANNING AND COMMITMENT TO ENSURE CARE IS PERSON-CENTRED AND DESIGNED TO MEET EACH INDIVIDUALS NEEDS. THIS IS JUST THE TIP OF THE ICEBERG.

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