Following a diagnosis of PSP or CBD, you will need to know where to go for help:
Your hospital may refer you to further Health and Social Care Services. Your GP is also able to make referrals for you.
Below is a list of services that you may access. Please be aware that you may not need all of them or need them immediately.
Referral to Adult Social Services can be made by yourself as well as Health and Social Care Professionals. You are entitled to a community care assessment which will identify if you have any personal care needs. Part of the process will include a means test, this will determine if any financial contribution will be required. Your carer is also entitled to a carers assessment.
Health and Social Care Professionals
You will come into contact with a wide range of health and social care professionals. These are often referred to as a multidisciplinary team or MDT. Amongst others, these professionals are likely to include:
Your GP can support you up to and following diagnosis, continuing throughout the course of the disease. They can refer you to other members of the multidisciplinary team
Usually, a Neurologist or Movement Disorder Specialist who will provide assessment, diagnosis and symptom management.
Occupational Therapist (OT)
The OT can advise about everyday living, moving and handling. They can also provide information about aids and adaptations to make your living environment safe and suitable for your needs.
Physiotherapists offer a range of interventions to help with mobility and fall prevention. They work closely with the OT to provide specialist equipment
District Nurses provide support with nursing care and equipment provision. They can also support continence care.
Speech and Language Therapist (SLT)
SLTs can arrange for assessment and provision of communication aids and strategies for communication. They work closely with the dietitian, offering advice regarding compensating for swallowing difficulties and safe consistencies of diet and fluids.
Works closely with the SLT (see above) to provide advice on maintaining good nutrition and diet adaptations.
Specialist Neurology Nurses
Specialist nurses can be based both in the community and linked to neurological clinics. They give support and advice specific to PSP and CBD.
Parkinson’s nurses work in hospitals, care homes and in the community. Many see people in all these areas. In hospitals, Parkinson’s nurses may run clinics and also make sure that other hospital staff understand your condition.
Palliative Care Team
Palliative care services include consultants in palliative medicine; specialist community nurses (CNSs), hospices and hospice teams. They can provide symptom management, support, information and counselling to people with PSP/CBD their carers and families.
Social Worker/Care Manager
You may have access to a social worker or a care manager either from Adult Social Care, via the hospital (if you have been an inpatient) or your local hospice. They will be able to offer advice regarding a range of services including financial support, care needs and respite support and help for carers and families