Carer s Experiences of Respite Care in Leeds

Transcription

1 Carer s Experiences of Respite Care in Leeds A snapshot of the experiences of carers accessing and receiving respite care in Leeds Healthwatch Leeds Ground Floor, Unit 8, Gemini Park, Sheepscar Way, Leeds, West Yorkshire Tel info@healthwatchleeds.co.uk About Us Healthwatch Leeds is here to help local people get the best out of their local health and care services and to bring that voice to those who plan and deliver services in Leeds.

2 Compliments - Quality (continued) Respite care is very good. The sitters are good Quite satisfied as it is It s been excellent The care my husband has is very good. He has been looked after very well and this has helped me more than I can say. They have been very accommodating. Concerns - General It was only after the person I cared for died that I realised respite was available. It would have helped us a lot Recently my respite was stopped because my husband objected to it What about me? As care homes are expensive we are having to contribute a lot more towards respite care We have always had to go privately. No one has told me or my husband anything else. We never got our request for respite care. I would like more dates. More hours would be welcoming. Don t know about it and no one wants to help. I feel you have to battle on. It s lonely Went to a place in York but the fees have now been increased, so this leaves me having to look elsewhere. Demand is high and not enough places available. My husband refuses respite care and wants to come everywhere with me. I am desperate for a break. To cut the cost for respite would be lovely. Need more of this kind of care for the carer and the cared for. More money for support caring at home. Don t know how to get it. Don t even know what it is. Provision in Leeds for adult respite care needs to be considerably increased. The lack of provision is causing families to go into crisis which is not cost effective to services. Healthwatch Leeds 2015 The text of this document (this excludes, where present, the Royal Arms and all departmental and agency logos) may be reproduced free of charge in any format or medium providing that it is reproduced accurately and not in a misleading context. The material must be acknowledged as Healthwatch Leeds copyright and the document title specified. Where third party material has been identified, permission from the respective copyright holder must be sought. Any enquiries regarding this publication should be sent to us at info@healthwatchleeds.co.uk You can download this publication from Compliments - General It s been a really helpful service Receiving the one off payment from adult social care enables me to have respite I really appreciated the respite care. It enabled me to recharge my batteries and continue to care for my husband at home Respite care means I can go on holiday just to get away now and then would make me a happier person. I m grateful for any help We have had respite care for some years. We both feel better for it. I feel we are very fortunate in the amount of respite we are allowed. 15

3 Contents Appendix 3 Concerns & Compliments Concerns - Access/Flexibility Homes were not in a position to give much notice of vacancies making it difficult to book a holiday. I cannot make arrangements to take holidays with family and friends as I cannot book respite in advance. This isolates me. The dates are given at the beginning of the year, but it would be nice to have some say in the dates. Have to book the dates too far ahead Would like some flexibility with start days. Only Friday to Friday available Occasional weekend care would be helpful Respite care takes the form of a sitter twice a week for 3 hours, not at a time of my choosing. The problem is not being able to book the respite well beforehand, which makes it difficult when you want to book things for yourself You have to wait so long for everything. Been waiting 6 months. There are not enough places and demand is high. We are given 30 days per year but cared for person will only go on weekends so we only get 18 days (6 weekends) and not allowed to have extra weekends. Would like more help to choose the right place. There is an expectation that I will know all the places in Leeds that provide respite. I understand that it will be unlikely that I will be able to book for selected dates. This will make it impossible for me to go on a family holiday. Recently been told that we are no longer eligible for respite care as live just outside the catchment area. Nobody helped me to access any alternatives. Doesn t matter how much notice you get, you can t get a bed since the closure of the council homes. Less than 2 weeks notice given which is ridiculous. How can carers plan a break away. The care needed not available in local authority run care home and difficult to access in the private care homes. Difficult to access the care needed due to lack of regular availability. I had a very long fight to get him into respite care. I was getting very little notice before he went to respite. I requested help over a year ago, still waiting, going through different channels. 4-5 Summary 6 Full report/background 7 What we did/who we spoke to 7-9 What we found 9 Other issues raised 10 Our key messages 11 Next steps/acknowledgements Appendices Concerns - Quality I would really like a lot more consistency as the person I care for does not like change and the people who care for him are different each time. The sitters are not formally trained in the care of my son s condition. Not enough days and not enough activities or variation. Compliments - Quality Very happy with the service that we receive I am very pleased with the care that is given. 14 3

4 4 Summary Appendix 2 Carers Respite Survey Why we did it? In the spring of 2014 Healthwatch Leeds, working with Carers Leeds and Leeds Mencap, targeted carers to find out their views and experiences about health and social care in Leeds. After speaking to a range of carers and groups, it emerged that arranging and receiving respite care had presented issues and challenges for some carers. Based on this feedback we planned a survey, the results of which are reported here. What we did? We worked with Carers Leeds to develop a short survey asking carers about their experiences of accessing respite care. To help identify any trends, we asked carers to specify the illness or disability of the person they cared for and whether they had been able to access care when they had requested it. The survey was widely distributed through Carers Leeds and Leeds Mencap and a range of organisations in the city. It was also made available on the Healthwatch Leeds website and promoted through social media. 4 13

5 5 Appendix Provision in Leeds for adult respite care needs to be considerably increased. The lack of provision is causing families to go into crisis which is not cost effective to services Appendix 1 Organisations that distributed the Carers Survey Carers Leeds Mencap Leeds Care & Repair People in Action Age UK Leeds Hamara Action for Gipton Aireborough Voluntary Services to the Elderly with Disabilities Bramley Elderly Action Burmantofts Senior Action Caring Together in Woodhouse Halton Moor and Osmondthorpe Project for Elders Horsforth Live at Home Leeds Black Elders Association Middleton Elderly Aid Moor Allerton Care MAECare Neighbourhood Action (New Farnley) Neighbourhood Elders Team (NET, Garforth) North Seacroft good neighbours Older Wiser Local Seniors (OWLS) Older People s Action in the Locality (OPAL) Otley action for older people Pudsey live at home Richmond Hill elderly action STEP Headingley (Supporting the elderly people) Crossgates & District Good Neighbours Farsley Live at Home Hawksworth Older People s Support Leeds Irish Health & Homes South Seacroft friends Key findings A significant majority of carers are happy with the quality of respite care and think that it meets their needs. About a third of carers who responded describe problems with accessing and arranging respite care. Most carers reporting issues with access to and arranging respite, cared for someone with dementia. Those caring for someone with a physical disability appeared to have the most positive experience of accessing respite care. 12 5

6 Full Report Less than two weeks notice given, which is ridiculous. How can carers plan a break away? Background appropriateness of respite care. Next Steps Acknowledgements According to the 2011 census, there are just over 71,500 people in Leeds providing unpaid care (9.5% of the resident population). The number of unpaid carers in the city has increased by 1,152 from 70,446 in 2001 to 71,598 in It is estimated that these carers provide over 1.5 million hours of unpaid care per week across the city. In April 2014 Healthwatch Leeds undertook a piece of work in partnership with Carers Leeds and Leeds Mencap, to find out about carers experiences of health and social care services in Leeds. One of the key issues highlighted by many of the carers that we spoke to was access to and The key messages that came out of the work with the carers groups was: Respite care is difficult to get for some carers. When provided, the respite care is not always flexible to meet the needs of the carers. Respite care is not always available when the carer needs it and on many occasions is offered at short notice, so does not allow families to plan ahead. Following this work and discussions with Carers Leeds, Healthwatch Leeds took a decision to pursue this issue further and gather more detailed information. This report will be shared with the commissioners and providers of respite care services in Leeds to raise awareness of the issues identified by the respondents. The report will also be published on the Healthwatch Leeds website and information offered back to carers through the groups that worked with us on this project. We will also share the findings of the report with the organisations that worked with us and helped to distribute the surveys through their networks, newsletters and bulletins. We would like to thank Carers Leeds and Mencap Leeds for all their help, support and guidance with this project. We would like to thank the carers groups who allowed us to speak to them and openly shared their personal experiences. We would also like to thank all the organisations that distributed the survey and the carers that took the time to complete and return the surveys to us. Finally a big thank you to our two volunteers Lesley Thornton who helped get the survey out to so many organisations and Rachel Crossley who analysed the findings and helped to draft the report. 6 11

7 Difficult to access the care needed due to lack of regular availability Our Key Messages In conclusion the results of this snapshot survey clearly support and echo the views and concerns of the carers that we spoke to at the carers support groups with regards to respite care in Leeds. The key messages that have been given by the carers accessing or using respite care are: There is a high level of satisfaction with the quality of respite care when it is received There can be a lack of flexibility about when and how respite is provided. Some services seem to plan an annual schedule while others are more based on availability. Both approaches can be a challenge for the carer to manage There appears to be a lack of information and awareness amongst some carers about respite care The financial cost of care was raised as a concern by some carers What we did We worked closely with Carers Leeds to develop a survey asking carers about their experiences of accessing respite care, and whether it met the needs of them and the person that they care for. The survey was distributed to a wide range of carers through the Healthwatch Leeds website and 31 organisations that work with or have contact with carers (see appendix 1 for full list of organisations). Who we spoke to A cross section of 79 carers responded to the questionnaire, covering different age groups and caring for people with a range of illnesses and disabilities, with some having multiple disabilities and care needs. The sample who responded to the questionnaire provided a snapshot of carers experiences of respite care in Leeds. What we found Almost a third of the carers we spoke to had problems accessing respite care. 27% of all the carers who responded had been unable to get respite care at the time they had requested it. This issue was most significant among those who care for someone with dementia or learning disabilities, where a third of carers reported not being able to access respite care. (45 of the respondents were caring for someone with 10 7

8 I really appreciate the respite care. It enabled me to recharge my batteries and continue to care for my husband at home dementia or learning disabilities). For those caring for someone with a mental health condition (9), 22% had been unable to access respite care. Among those who care for someone with a physical disability (40), only 5% reported issues with access to care. Many respondents said that they thought high demand and a lack of places for respite care caused issues for people requesting it. Some mentioned the closing of council-run care homes as a factor, and thought that there weren t enough provisions made in private care homes for respite care. A third of the carers we spoke to mentioned problems with flexibility for the timings of respite care. 31% of all respondents said that they were not given enough notice of when their respite care would be, and almost as many (27%) mentioned problems with the timing and flexibility of respite care. Carers who care for people with dementia and learning disabilities reported most access issues while carers for people with physical disabilities seemed to have the best access to respite care. The most common issues reported were about being able to book a respite place in advance, particularly when it came to private care homes. This led to a perceived lack of flexibility to choose the dates of respite care. Many carers mentioned that they were given the same dates for respite every year, and were unable to change these. This affected their ability to plan other life activities including hospital admissions for the carer. Some carers described not being given enough notice of when their respite care would happen. Many people believed that respite care seemed to be allocated as and when spaces became available in care homes. This led to carers getting short notice of available respite so were unable to arrange holidays, etc. for themselves. Overall, carers are happy with the quality of respite care. Two thirds (76%) of carers reported that the respite care they receive meets their needs. Despite reported problems with accessing and arranging respite care when caring with someone with dementia, positive comments were made about the care once arranged. Many carers took the time to mention how important respite care was for them, speaking of how much of a help it had been, and that they were very grateful for it. Other issues raised It is worth noting that some carers mentioned financial concerns to do with affording respite care. Others felt that they had not had sufficient information about how to access respite care or had not been offered it (e.g. by the social worker) but had to learn about it and pursue it themselves. 8 9