SCOTTISH GOVERNMENT CONSULTATION ON THE COMMUNITY CARE FOR OLDER PEOPLE LEAFLET
GENERAL COMMENTS
i. Capability Scotland works with disabled people of all ages and their families and carers throughout Scotland to provide a broad range of flexible, personalised care services. We are also a campaigning organisation, committed to using the influence we have to ensure disabled people achieve the same human and civil rights as the rest of society.
ii. Capability welcomes the opportunity to respond to the Community Care for Older People Information Leaflet Consultation. As part of the internal consultation process we tested the suitability of the leaflet by holding a focus group at our New Trinity Centre. The centre, which is run by Capability Scotland, provides a day care service supporting adults with disabilities in all aspects of their care. The focus group consisted of around ten adult with learning difficulties.
iii. The purpose of the focus group was, firstly, to test the accessibility of the leaflet amongst an often hard to reach group and secondly, to gather ideas on how the leaflet might be made more accessible.
General Comments
1. Overall, the leaflet is a very useful resource. It sets out the various care options in plain English and in a readable format. Comments from our user group at the New Trinity Centre included the following: “This would be help me if I needed to use it”, “The leaflet is a good length, not too long,” and, “There are not too many words on each page, it’s quite easy to read.”
2. Despite this, the clarity of the leaflet could be improved in places (for more details see paragraphs 6 -16 below). The leaflet should also be made available in a range of formats, including Braille, audio, large print, BSL and Easy Read. This point was raised by our focus group which mentioned the need for an audio version of the leaflet. One participant also commented, “ I think they should do a symbolised version with Boardmaker - not everyone can read words.”
3. Furthermore, the letter introducing the consultation states that the objective of the leaflet is to direct people towards Care Information Scotland (CIS) for more information on their options. The leaflet, however, only mentions two ways of getting further information from CIS – by phone or by e-mail. These will not be suitable means of communicating for much of the target audience. As the main source of information on care options, CIS should consider providing home visits, e-mail advice, DVD and BSL information, Type Talk etc. This is essential if hard to reach groups such as individuals with learning difficulties, literacy problems, communication difficulties or sensory impairments are to be made aware of their rights and options.
Do you believe that TAMIACH should be replaced with Finding the Care that is Right for You?
4. It is logical for there to be a leaflet such as ‘Finding the Care that is Right for You’ to give an overview of all the options available to people. However, this does not necessarily negate the need for an information leaflet on residential care. Many people feel frightened and unsure of entering residential care and having an easily accessible leaflet explaining the process and available options might begin to tackle this.
5. Furthermore, the focus group at the New Trinity Centre raised the point that it should be as easy as possible for people reading the leaflet to find out more about their care options. One participant commented that, “They should make a pack with all of the other leaflets. It’s no good telling people a wee bit then getting them to find out more”. It might, therefore, be worth continuing the leaflet on residential care, as well as brief leaflets on alternative care option in an information pack along with ‘Finding the Care that is Right for You’.
Do you have any suggested additions or amendments to the proposed leaflet?
6. Overall, the leaflet is clear and the illustrations are helpful. Members of the focus group noted that “the pictures make it easier to understand” and “The pictures match the words – this is good because they often don’t with things like this”. Despite this, the illustrations on the front page could be more instructive as it doesn’t immediately suggest this is a leaflet about care for older people.
7. Some of the language used could also be more straightforward. For instance, in the first paragraph the word ‘comprehensive’ could be replaced with ‘more’ [information]. The leaflet should be as accessible as possible and the most clear and simple terms should be used at all times. This was raised by a member of our focus group at New Trinity, who commented, “ I can understand most of it, but some bits use fancy words that I don’t understand. Can they use easier words?” Another member of the group said “I wish they wouldn’t use so much jargon.”
Summary of some of the services that are available
8. The first paragraph of this section makes reference to the requirement for a Care Needs Assessment. It would be useful to give a brief explanation of what a care assessment is and what it involves at this point. This was raised by the focus group at New Trinity. Comments included, “ I don’t know much about a Care Needs Assessment. They should explain what it means.” And “Words like ‘assessment’ are hard to understand”. A better explanation of what a care needs assessment is might also make the idea seem less daunting and intrusive to those who are reluctant to be assessed.
9. There was also a feeling amongst the user group that it can be difficult to get your local authority to carry out a community needs assessment. Comments included; “Getting a Care Needs Assessment is very difficult. It might happen eventually.” And, “My mum didn’t get an assessment. Nobody gives her any help.”
10. It might, therefore, be worth mentioning that you may have to wait for a Community Needs Assessment to be performed. This could prevent people becoming frustrated if they are told by their local authority that they won’t be given an assessment immediately.
Care at Home
11. In the Care at Home, section some of the listed services might benefit from a very brief explanation. Those who have not familiar with services such as Telecare or Care and Repair are unlikely to understand what they are and how they could be beneficial. Comments from the focus group included the following, “They should explain what this list means.”, “I can guess what some of them mean but I’m not too sure” and, “What is Energy Assistance or Telecare?”
Supported Housing and Care Homes
12. In the section on Supported Housing, the two paragraphs might be better in reverse order, so that the explanation of what supported housing is comes before the paragraph explaining how to access it. Otherwise, the section is very clear. Comments from the focus group included the following, “This bit is good. It makes sense and doesn’t use too much jargon.”, “I can understand this” and “This explains things properly”.
Support for Carers
13. The section of the leaflet which proved most controversial with the focus group was that on Support for Carers. The group understood the information presented but felt it gave an inaccurate picture of the support given to and available for carers. Comments included the following, “Social work didn’t help my mum. The told her too phone Social Care Direct…!”, “I live at home with my mum. She is 83. I get care at home, 5 hours a week, but my mum gets no help for her” and, “I live at home with my mum. She is retired now. She was ill for three weeks but we got no help from social work. They told us to try and manage”.
14. This highlights a need for more information on accessing support for carers. One possibility might be to produce a similar leaflet on support for carers detailing public and voluntary sector sources of support. Again, the leaflet should acknowledge that some people will have to wait for support and that the supply of support is not unlimited.
Care Charges
15. In the section on Care Charges, it might be helpful to state that people will not be forced to accept services or pay for anything they do not want – or that they will not be charged for goods and services that they can’t afford. In other words, it is important to emphasise that people will remain in control of what their money is spent on. Comments from the focus group included the following. “This bit is not clear”, “This is the most important bit and it doesn’t really tell you that much” and “They should tell you how much things really cost.”
16. It is obviously very difficult to get a balance between keeping the leaflet simple and giving people the information they want. One option might be to include a phone number and web address in this section for more information about how much certain services and/or equipment are likely to cost. (including the availability of information via Type Talk, telephone translation services, e-mail etc.) Another option could be to include several brief and simple case studies to give an idea of how he charging system works.
We would plan to distribute copies of the leaflet to a wide range of organisations including: Social Work Departments, Community Health Partnerships, GP surgeries, Citizens Advice, libraries and community centres. Do you have any other suggestions for ensuring that the leaflet is accessed by all those who may need it?
17. It is important that voluntary sector organisations are given the leaflet to distribute. In many cases people might be afraid to approach public bodies for information on support for fear that they will be ‘stuck in a home’. They may have a better, more trusted relationship with the voluntary sector organisations and may be more likely to approach them for information. Furthermore, voluntary sector organisations often have better access to hard to reach groups such as BME groups, those with literacy problems, those with learning disabilities etc.
18. All the orgsnisations and individuals listed in the leaflet (such as Care and Repair, meal delivery services and occupational therapists) should also have copies to distribute to people. This will help them to explain the context of their work. They will also come into contact who may need this information.
Thank you for the opportunity to contribute to this consultation.
Hanna McCulloch,
Senior Policy Advisor,
Capability Scotland
11 Ellersley Road,
Edinburgh
0131 347 1025
APPENDIX I – Comments from the focus group held at the New Trinity Centre on 14.01.11
General
“I think using pictures make it easier to understand”
“The pictures match the words – this is good because they often don’t with things like this…!”
“I think they should do a symbolised version with Boardmaker. Not everyone can read words”
“What about an audio version?”
“There are not too many words on each page, it’s quite easy to read”
“The leaflet is a good length, not too long”
“I can understand this”
“This would help me if I needed to use it”
“I can understand most of it but some bits uses fancy words that I don’t understand. Can they use easier words?
Introduction
“This seems clear to me”
“Many older people don’t know how to use the internet to find things”
“Is this a free phone number?, many people don’t have a lot of money”
Summary of some of the services that are available
“It would be better to have only one number to phone – they could then put you through to the people you need to talk to” (ie. The relevant local authority)
“I don’t know much about a ‘Care Needs Assessment’, they should explain what it means”
“My mum didn’t get an assessment. Nobody gives her any help”.
“Social workers don’t do the things in this leaflet”
“I wish they would not use so much jargon. Words like ‘assessment’ are hard to understand”
“Getting a Care Needs Assessment is very difficult – it might happen eventually…!”
Care at Home
“I think it is good that they wrote a list of things they can help with”
“They should explain what this list means”
“I can guess what some of them mean but I’m not too sure”
“What is ‘energy assistance’ or ‘telecare’?”
Supported Housing + Care Homes
“This bit is good. It makes sense and does not use as much jargon”
“I can understand this”
“This explains things properly”
“This makes sense”
Support for Carers
“This doesn’t happen in real life”
“It doesn’t matter what the leaflet says if social work don’t do these things”
“Social work didn’t help my mum. The told her too phone Social Care Direct…!”
“I live at home with my mum. She is 83. I get care at home, 5 hours a week, but my mum gets no help for her”
“I live at home with my mum. She is retired now. She was ill for three weeks but we got no help from social work. They told us to try and manage”
“My mum gets no money for caring for me”
“I wish someone would help my mum”
“My mum has never been offered the things it says in this bit”
Care charges
“This bit is not clear”
“It doesn’t tell you how much things are”
“This is confusing”
“This is the most important bit and it doesn’t really tell you that much”
“They should tell you how much things really cost”
Further information
“They should make a pack with all of these other leaflets. It’s no good telling people a wee bit then getting them to find out more themselves”