Hertfordshire PASS was considering applying for a health impact award with Glaxo Smith Kline, so instigated a study on its 98 Direct Payments users who employ their own personal assistant(s) / carer(s). Whilst we decided not to apply, we feel the need to publish some important results. What follows therefore is the report we prepared - subsequently sent to all 98 users.
INTRODUCTION.
Hertfordshire PASS aims to be a user-driven charity using employment, and ‘being an employer of care staff’ (- through the use of Direct Payments) to enable disabled people to live independently.
In addition to enabling people to live independently, Hertfordshire PASS believes its work may have an impact on the health of the people it provides a service for.
As a result a questionnaire was prepared (appendix 1) and sent to the 98 Direct Payment users (ie ‘employers of care staff’) who access PASS’s Hertfordshire PASS’s Payroll and Support Service.
RESULTS.
Response rate
Of the 98 who received ‘the impact on your health of employing your carer(s)’ questionnaire, 35 were returned to PASS – a response rate of 36%. Of these, 2 questionnaires were sent back blank.
Changes to health – comparing average scores
The average score for health before employing a carer for the 33 Direct Payment users was 4.0 (on a 0 to 10 scale) - equivalent to Poor to Average health, and 6.0 after employing a carer - equivalent to Average to Good. A paired t-test shows this is not a significant difference statistically, however, many of the comments listed below demonstrate how important employing one’s own carer is for health. (We would need a bigger sample than 33 to prove 'employing your own PA / carer improved health'.)
Reasons given as to why employing a carer has an impact on health.
A respondent....
....who rated their health as good, then very good, once they employed a carer reported: “I’m more confident with help can do much more. Not so much at risk when having seizures as the carers take care of me.”
....who needed help with bathing, cleaning and shopping, who went from ‘very poor’ health to‘average’ health reported: “I can get out and about”.
....with multiple health problems went from ‘very poor’ to ‘average' reported: “there is less stress”.
....with multiple health problems went from ‘very poor’ to ‘poor’ and reported “better diet management, significantly increased independence and management of conditions and its symptoms”.
....with depression who was housebound who reported poor health before having a carer, and good health after reported “I feel in control again”.
....who because they were “always falling, so cannot go anywhere” had poor health, then very good health once they had a carer reported: (I now have a) “balanced lifestyle, enjoying activities”. (Has having a balanced lifestyle, reduced the falling?)
....who reported her health as poor because “I went without meals. Had no motivation to struggle to get dressed. Saw no one from one day to the next. Forgot my medication. Couldn’t keep my house clean. Just very very depressed”. Once employing their own care staff, their health improved to very good because “I feel looked after, depression has gone. I eat regular, healthy meals. I love going to my “day care” too and having a carer get me up and motivated for the day. Its made me very happy.”
....whose health went from average to good and included the comment: “my health has improved now as all the carers I employ look after me very well”.
....with angina etc whose health moved from poor to ‘average to good’ reported: “I feel more secure that I have someone in every day to help me.”
....slowly losing her mobility, whose health went from average to good reported: “maintained my cleanliness..” once she employed her own carer.
....reported very poor health because of a brain haemorrhage and stroke when 3 months pregnant, and very good health after employing a carer because “the help I receive has enabled me to concentrate on improving both mentally and physically…to help looking after my son. I couldn’t manage without the help I receive”.
....who reported speech problems and confusion if they go to places they don’t know, and average health, reported good health after they employed their carer whilst adding: “I now have bit more confidence in myself also my speech is getting there; still a long way to go. Still need someone with me when I go out”.
....who was “not able to get out of bed or wash or dress” went from very poor, to average health given their carer gave “help with daily tasks. Has made a great impact so less stress”.
....with multiple health issues moved from very poor, to average health because employing their own care staff meant they were “not so tired all the time, help cooking, shopping, cleaning, child care, more time to rest and pain not so bad 27/7 with ability to rest”.
....with progressive Multiple Sclerosis reported average health both before and after employing a carer however they reported “my general health is good but obviously my disability has increased so my carer is indispensible”.
....rated their health as average because “more stressful trying to keep up with everything (as well as being) quite dependent on my husband for help”. After employing a carer they reported their health as very good and “more independent and therefore stress levels have diminished both for me and my husband”.
LINKS TO THE ACADEMIC RESEARCH.
The above findings tally with the academic research, for example that reported by a Social Care Institute for Excellence report (briefing 20) entitled ‘The implementation of individual budget schemes in adult social care’ published 2007, and updated 2009 which states: “positive outcomes for satisfaction, quality of life, social integration and health have been reported by older people, physically disabled people, people with mental health problems and people with learning disabilities who use a personal assistant they have chosen” (and provides 4 references to substantiate these claims).
CONCLUSIONS - AND WHAT NEXT?
Hertfordshire PASS’s service clearly has an impact.
The findings from the questionnaires demonstrate that Hertfordshire PASS provides an invaluable service to disabled people, in enabling them to be more effective employers of their care staff which in turn clearly has a positive impact on the health of some very vulnerable people.
Offering PASS’s service to other Direct Payment users.
In Hertfordshire PASS’s experience, there has been an increasing trend for many Direct Payment users to move to cheaper payroll providers which do not provide the additional telephone support provided for 2 days every week by Hertfordshire PASS. It is therefore hoped, for the more vulnerable disabled people, that they be signposted to Hertfordshire PASS’s excellent service – which includes plans for its telephone support to be extended by early 2012 for a further 2 days / week, staffed by disabled people, for disabled people.
THANKS
Finally thank you to all Hertfordshire PASS's Direct Payment users who participated in the survey, to Sylvia Bishop for the excellent service she provides them, and to Karl Hunt and Sharon Willing who processed the data.
Nigel Fenner (Manager – Hertfordshire PASS)
13th September 2011
Appendix 1
Hertfordshire PASS
The impact on your health of employing your carer(s) - QUESTIONNAIRE.
Hertfordshire PASS ( - who manages your payroll) wants to find out what the impact of you employing your care staff has had on your health, so would be very grateful if
you would answer a few questions on this.
1. Before employing care staff or Personal Assistants my health, in
general, was….(circle one answer, please)
Very poor
Poor
Average
Good
Very Good
Can you describe what health issues you had before employing care staff?
2. Since I started employing care staff or Personal Assistants my health, in
general, has been
Very poor
Poor
Average
Good
Very Good
Can you describe what changes (if any) to your health have taken place since you
started to employ care staff?
Thank you. We will circulate the answers to the above questions to all Hertfordshire PASS’s Payroll clients in September.
Nigel Fenner (Manager Hertfordshire PASS).
Please return this questionnaire to Hertfordshire PASS using the enclosed stamped addressed envelope provided – by the end of August. Thanks.
