Found: disability have either fully closed, do not accept new admissions, or have reduced or stopped NHS- led respite

Found: Lots of families say they struggling to get respite care, they are struggling to get long-term care

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether advice given to a newly diagnosed Parkinson's Disease patient contains (a) contact details for a local Parkinson's nurse, (b) a date for a first appointment and (c) information on local support groups.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The National Institute for Health and Care Excellence’s (NICE) guidelines on Parkinson’s disease in adults include recommendations for communication with people with Parkinson's disease, and their carers. The guidelines do not specify a particular leaflet, such as the one from Parkinson’s UK, but they do recommend that: communication with people with Parkinson's disease should aim towards empowering them to participate in judgements and choices about their own care; discussions should aim to achieve a balance between providing honest, realistic information about the condition, and promoting a feeling of optimism; because people with Parkinson's disease may develop impaired cognitive ability, and communication problems, they should be provided with both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary, in a consistent manner; family members and carers should be advised about their right to a carer assessment, assessment for respite care, and other support; people with Parkinson's disease should have a comprehensive care plan agreed between the person, their family members and carers as appropriate, and specialist and secondary healthcare providers; and people with Parkinson's disease should have an accessible point of contact with specialist services, such as a Parkinson's disease nurse specialist.

The exact information that is provided to a newly diagnosed Parkinson’s patient will vary, but would usually include referral to a Parkinson’s nurse. Information about local support groups would usually be provided by the Parkinson’s nurse. The Department will explore whether anything further can be done to improve the provision of post-diagnosis patient information for those with Parkinson’s disease.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what guidance is provided to clinicians on advising patients recently diagnosed with Parkinson's Disease; and whether that guidance recommends that patients be given a leaflet from Parkinson's UK.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The National Institute for Health and Care Excellence’s (NICE) guidelines on Parkinson’s disease in adults include recommendations for communication with people with Parkinson's disease, and their carers. The guidelines do not specify a particular leaflet, such as the one from Parkinson’s UK, but they do recommend that: communication with people with Parkinson's disease should aim towards empowering them to participate in judgements and choices about their own care; discussions should aim to achieve a balance between providing honest, realistic information about the condition, and promoting a feeling of optimism; because people with Parkinson's disease may develop impaired cognitive ability, and communication problems, they should be provided with both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary, in a consistent manner; family members and carers should be advised about their right to a carer assessment, assessment for respite care, and other support; people with Parkinson's disease should have a comprehensive care plan agreed between the person, their family members and carers as appropriate, and specialist and secondary healthcare providers; and people with Parkinson's disease should have an accessible point of contact with specialist services, such as a Parkinson's disease nurse specialist.

The exact information that is provided to a newly diagnosed Parkinson’s patient will vary, but would usually include referral to a Parkinson’s nurse. Information about local support groups would usually be provided by the Parkinson’s nurse. The Department will explore whether anything further can be done to improve the provision of post-diagnosis patient information for those with Parkinson’s disease.

Found: (Male, Age 35 -44, Cares for parent, Employed part-time) Few claimants had accessed respite care, usually

Found: disability groups, social welfare (such as Oxfam, NSPCC, Samaritans, Citizens Advice Bureau), offering respite

Found: disability groups, social welfare (such as Oxfam, NSPCC, Samaritans, Citizens Advice Bureau), offering respite

Found: there some people who would benefit more from improved access to support or treatment (for example, respite

Found: there some people who would benefit more from improved access to support or treatment ( for example, respite

Found: conditions within homes, including staff shortages, and that some had treated police detention as ‘respite

Found: claimant or the disabled person • the claimant or disabled person spending time in hospital • respite

Found: qualifying young person who is being cared for or housed by a local authority for a reason other than respite

Found: penses were paid to cover any additional costs incurred for participating for example, to provide respite