The PSP Association

Therefore, a multi-disciplinary approach is recommended, including early palliative care intervention. A keyworker should be identified to coordinate the care of the multi-disciplinary team and ensure regular reviews, as the needs of the person with PSP or CBD will change over time.

Neurologist, geriatrician or consultant in medicine for the elderly

These specialists are vital in diagnosing PSP or CBD and ensuring that the person / their family have appropriate initial information about the support available, including The PSP Association.

General Practitioner

The GP is the lynchpin in putting together a multidisciplinary team, including arranging referrals to therapists and to The PSP Association, to ensure that supportive therapies are in place at an early stage. Although there are no current treatments to extend the course of the disease, there are a range of drugs and treatments available to assist with symptom management.

Community Nurse

Community nurses have a very important role in supporting the patient living at home and can often signpost to other professionals.  They will make an initial assessment and care plan. Equally, where patients require hospitalisation in the later stages of the disease, nursing is important to ensure quality care while in hospital.

Occupational Therapist

The Occupational Therapist will help clients to manage a range of daily activities, to ensure wellbeing, safety and reduce potential injury or falls.  They can advise and arrange helpful home modifications or equipment.  Therefore, having an assessment by an Occupational Therapist first will prevent the disappointment and cost of families buying equipment directly only to find it’s of little help.

Physiotherapist

The Physiotherapist will advise on practical ways to maintain mobility, including all aspects of gait, ways to minimize falls, (including walking aids and footwear review), exercises and chest care.  Assessment by a Physiotherapist or at a Falls clinic is so important in preventing falls and potential injury or the need for hospitalisation.

Ophthalmologist / Orthoptist

Eye problems may be an early sign of PSP and the Ophthalmologist or Orthoptist can advise on ways to manage symptoms, such as difficulties with upgaze and downgaze, dry or sore eyes or visual changes, thereby also helping to reduce the risk of falls.  They can advise on the ability to drive a vehicle safely.

Speech and Language Therapist

The SLT will be important in advising on all aspects of communication, including helpful communication strategies or equipment.  This can greatly help the person's capacity for social interaction and sense of well-being.  The SLT will also advise on all aspects of swallowing, including eating and drinking safely.

Social Services

The Social Services team have a vital role to play in assessing and ensuring good support and care of the person with PSP or CBD.  They will also oversee any carer assessments and respite care needs, so benefiting the wider family.  This is so important as caring for someone with PSP or CBD can become a 24 hour job and regular periods of respite are therefore important to enable carers to continue in their role.

Psychologist

PSP or CBD can sometimes cause emotional and behavioural changes and the Psychologist can advise on such aspects, making an assessment and giving support.  They can also advise on aspects affecting the wider family, such as potential role changes and any issues of loss.

Dietician

The Dietician will give a nutritional assessment and advise on food preparation and whether any assisted feeding is required.  This helps the person's safety, where swallowing muscles are affected, and sense of well-being in the enjoyment of food.

Palliative Care Team

It is never too soon to involve palliative care, as the progression of  PSP or CBD will be different for each person and sometimes can occur fairly rapidly.  Our Nurse Specialists are available to give teaching sessions to local nursing homes or hospices if required.  Ideally a referral to the palliative care team will allow access to the local hospice for respite periods, day care where appropriate, outreach services and support for the family or carers.  (It will also mean that when terminally ill, the person can decide where to receive care to ensure a peaceful and comfortable death).  The palliative care team can also arrange for spiritual and counselling care as required.