1. Psychology Services Denise Beck – Psychology manager Jan Helbert – Consultant Clinical Psychologist

2. Agenda Brief overview of health psychology services in Bradford & Airedale Brief overview of health psychology services in Bradford & Airedale Neuropsychology provision and gaps in service Neuropsychology provision and gaps in service Non-cancer palliative care provision – Jan Helbert Non-cancer palliative care provision – Jan Helbert

3. Health Psychology Services – Bradford Cover a range of health conditions, and work across organisations including: Cover a range of health conditions, and work across organisations including: Heart Disease and Diabetes Heart Disease and Diabetes Renal Disease Renal Disease COPD COPD Pain Pain ICU ICU Child Development Centre Child Development Centre Plastics Oncology Sexual Health, Psychosexual Therapy. Neuropsychology Palliative Care (Cancer and non cancer) Staff counselling 15.4 WTE Psychologists

4. Airedale & Craven Health Psychology Services General Health Psychology Service (1 WTE) General Health Psychology Service (1 WTE) Neuropsychology service (1WTE) Neuropsychology service (1WTE) No palliative care psychology service (cancer or non-cancer) No palliative care psychology service (cancer or non-cancer)

5. Airedale referrals Over the last year: Over the last year: 4 refs for people with terminal neurological conditions eg MS, MND 4 refs for people with terminal neurological conditions eg MS, MND 3 refs for people with Parkinsons Disease (1 palliative) 3 refs for people with Parkinsons Disease (1 palliative) 1 person with tetraplegia, referred from ICU 1 person with tetraplegia, referred from ICU Support and consultancy to the palliative care team Support and consultancy to the palliative care team

6. Challenges within neuropsychology Bradford Limited service provision – 1WTE neuro-psychologist – Limited service provision – 1WTE neuro-psychologist – Community Head Injury Team (0.5) Community Head Injury Team (0.5) Neuro-rehab outreach service Neuro-rehab outreach service Neuro-rehab in-patient Neuro-rehab in-patient Out-patient referrals (consultants, GP’s & Psychologists) Out-patient referrals (consultants, GP’s & Psychologists) A detailed neuro-psychological assessment (6 -10 hours) A detailed neuro-psychological assessment (6 -10 hours)

7. Neuropsychology Service Assessment and interventions where cognitive impairment is identified as an obstacle to rehabilitation in the community. Assessment and interventions where cognitive impairment is identified as an obstacle to rehabilitation in the community. No service for longer term psychological adjustment issues or mental health difficulties arising from a particular neurological diagnosis. No service for longer term psychological adjustment issues or mental health difficulties arising from a particular neurological diagnosis. Broader service remit for CHIRT Broader service remit for CHIRT

8. Who can be referred? People with acquired (non-traumatic brain injury) People with acquired (non-traumatic brain injury) People with a neurodegenerative condition (MS, PD, MND) – where work is neuropsychological functioning rather than emotional/adjustment to illness issues. People with a neurodegenerative condition (MS, PD, MND) – where work is neuropsychological functioning rather than emotional/adjustment to illness issues. People with a traumatic brain injury (seen within the Community Head Injury Team). People with a traumatic brain injury (seen within the Community Head Injury Team).

9. Reasons for referral Assessment – return to work / education; capacity issues, financial affairs / driving; managing challenging behaviour (related to cognitive impairment) Assessment – return to work / education; capacity issues, financial affairs / driving; managing challenging behaviour (related to cognitive impairment) Feedback - info / education on impairment, consequences & prognosis. Feedback - info / education on impairment, consequences & prognosis. Recommendations re level of care / support Recommendations re level of care / support Assessment of mental capacity Assessment of mental capacity Support for rehab staff in work with cognitive & psychological barriers to rehab Support for rehab staff in work with cognitive & psychological barriers to rehab Broader remit with CHIRT Broader remit with CHIRT

10. Gaps in service in Bradford Psychological support is offered by many different health and social care staff Psychological support is offered by many different health and social care staff But….. Insufficient neuropsychological provision But….. Insufficient neuropsychological provision & Service users and staff have identified a need for specialist support for complex emotional / psychological / relationship issues that can be triggered by or exacerbated by the impact of an injury or diagnosis. & Service users and staff have identified a need for specialist support for complex emotional / psychological / relationship issues that can be triggered by or exacerbated by the impact of an injury or diagnosis. Support / consultancy for staff working with psychological issues Support / consultancy for staff working with psychological issues

11. What Psychological Care can be provided for patients with advanced MS ? Mrs Jan Helbert Consultant Psychologist Palliative Care and Oncology Bradford Teaching Hospitals NHS Foundation Trust

12. Palliative Care Palliative Care is:……………. the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. Palliative Care is:……………. the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments. (National Council for Hospice and Specialist Palliative Care Services 2002)

13. Psychosocial care in palliative care… The impact of advancing illness for both patient and those close to them Both Living and coping with a life limiting illness Support to face loss and death

14. Psychosocial care encompasses.. Psychological approaches to enable patients and those close to them to express thoughts, feelings and concerns relating to the illness. Psychological approaches to enable patients and those close to them to express thoughts, feelings and concerns relating to the illness. Psychological interventions to improve psychological and emotional well being of patients and their families. Psychological interventions to improve psychological and emotional well being of patients and their families.

15. The psychological needs of those with advanced illness For patient centred care For patient centred care Sensitive and timely communication and information (breaking of bad news) Sensitive and timely communication and information (breaking of bad news) Conversations to help patient + other family members to share issues arising through their adjustment and readjustment to illness Conversations to help patient + other family members to share issues arising through their adjustment and readjustment to illness Support through transitions, dealing with challenges and losses - of independence, of certainty, of roles… Support through transitions, dealing with challenges and losses - of independence, of certainty, of roles… Eliciting concerns, exploring fears and coping Eliciting concerns, exploring fears and coping Talking with family, children- how, what and when? Talking with family, children- how, what and when? Help to manage symptoms Help to manage symptoms Support with end of life decisions- to enable people to be cared for in place of their choice Support with end of life decisions- to enable people to be cared for in place of their choice Support with grief and bereavement follow-up. Support with grief and bereavement follow-up.

16. Symptoms common in later stages of MS Spastic muscle weakness, loss of mobility and muscular control Spastic muscle weakness, loss of mobility and muscular control Pain Pain Sleep disturbance Sleep disturbance Bladder dysfunction and urinary incontinence Bladder dysfunction and urinary incontinence Sexual dysfunction- erectile failure, anorgasmy Sexual dysfunction- erectile failure, anorgasmy Severe fatigue Depression ( increased incidence with MS compared to other chronic neurological conditions) Cognitive dysfunction( for over 40%) impairment in recent memory, sustained attention, conceptual reasoning, verbal fluency and visuo spatial perception

17. Specialist Psychology service to palliative care in Bradford 1.5 WTE clinical psychologist posts 1.5 WTE clinical psychologist posts Both posts are embedded within the multi disciplinary Community Palliative Care Team. Both posts are embedded within the multi disciplinary Community Palliative Care Team. The team accept referrals for adult patients who are registered with a Bradford GP who have advanced and progressive disease for whom the prognosis is limited (although it can be several years) and the focus of care is quality of life.( Operational Policy 2005) The team accept referrals for adult patients who are registered with a Bradford GP who have advanced and progressive disease for whom the prognosis is limited (although it can be several years) and the focus of care is quality of life.( Operational Policy 2005) One or more of the following needs are unable to be met by the Primary Health Care Team: Symptom control, psychological support,social support. Team also offer assessment for hospice care and staff support for dealing with difficult situations or death. One or more of the following needs are unable to be met by the Primary Health Care Team: Symptom control, psychological support,social support. Team also offer assessment for hospice care and staff support for dealing with difficult situations or death.

18. Levels of specialist psychological intervention Working directly with patients and families Working directly with patients and families Working with staff to help understand how neurological conditions may affect behaviour and personality and offer guidelines for working with patients Working with staff to help understand how neurological conditions may affect behaviour and personality and offer guidelines for working with patients Extending psychological care through others – teaching/training, consultation etc Extending psychological care through others – teaching/training, consultation etc Contributing at organizational level to use knowledge to help improve patients care and experience Contributing at organizational level to use knowledge to help improve patients care and experience

19. Criterion for Specialist Psychology Assessment and interventions For those who have complex and/or moderate- severe level of emotional, psychological, relationship issues arising in response to advanced illness. Where there is significant psychological distress that does not resolve; that interferes with general life activities or treatment For those who have complex and/or moderate- severe level of emotional, psychological, relationship issues arising in response to advanced illness. Where there is significant psychological distress that does not resolve; that interferes with general life activities or treatment

20. Referrals to Psychology Adjustment difficulties- coping with diagnosis, prognosis, treatments, illness progression. Adjustment difficulties- coping with diagnosis, prognosis, treatments, illness progression. Depression/grief Depression/grief Anxiety Anxiety Anger/frustration Anger/frustration Existential and end of life issues Existential and end of life issues Coping with procedures Coping with procedures Communication/relation ship with family/staff Psychosexual problems Managing symptoms Neuropsychological issues – confusion,memory problems,disorientation, attentional diffs

21. Issues New area of work New area of work Over last 2 years only 4 referrals to psychologists with neurological component Over last 2 years only 4 referrals to psychologists with neurological component An important area for development. An important area for development.

22. Issues Steep learning curve about illnesses, specific psychological issues and approaches to best help patients and their families Steep learning curve about illnesses, specific psychological issues and approaches to best help patients and their families Limited resources Limited resources How can specialist psychology knowledge and skills best be used? How can specialist psychology knowledge and skills best be used? ?Working directly with patients + families ?Working directly with patients + families ?Helping other staff to develop their skills ?Helping other staff to develop their skills ?Contributing at organisational level to help improve patients care and experience ?Contributing at organisational level to help improve patients care and experience