Jaynie: Staying at work
Jaynie has a long-term health condition and wanted to stay at work and manage at home.
Jaynie is in her 50s. She has a long-term health condition which fluctuates and will give her more difficulties as it progresses. She is now less able to lift things or have much grip, and this is making housework and shopping very difficult. Jaynie works but has reduced her hours to part-time and this is working well. She uses a taxi to get to work which is paid for through a work-related scheme.
Jaynie was out with some friends and they got talking about services they used to make life easier for themselves. A friend asked Jaynie what she did and they talked over ideas that could make life easier for her. Afterwards, one of her friends said she was surprised Jaynie hadn’t been getting more advice on support she was entitled to and offered to come with her if she wanted company for any meetings with a social worker.
Jaynie got in touch with a voluntary organisation that supports people with her condition. The message there was similar – you are entitled to get support as your condition changes and you are able to do less. She rang their helpline and got the contact for the social work team for her area.
The social worker talked over what help Jaynie could get now and how she could get more in the future. Jaynie thought that there could be a problem with her friend being involved but the social worker said this was fine and to involve as many of her friends as she wanted as part of planning what she wanted to achieve and what support would help.
- Practical help at home – both to solve immediate problems and so she was not so tired, which would let her be better able to manage her condition.
- Stay at work for as long as she can.
- Keep in touch with friends.
- Be able to enjoy herself for as long and as much as she can – go to the pub, get away for weekends.
- Her house to be her home and not a variation on a hospital or a place where people come to work.
The social worker and Jaynie worked out what help she needed. He suggested Jaynie think about a Direct Payment as it would be more flexible than having the Council organise services for her. He also gave Jaynie details of an independent advice project that could give her more advice on this.
This is the list of arrangements Jaynie made.
- Jaynie found a care service to help her with housework. She wanted a service where care workers get training and where there would be a small staff team – so cover for holidays and so on but also enough consistency.
- She used part of the direct payment for someone who can help her get ready for work in the mornings she goes to work as this is becoming more of a struggle. Jaynie decided to recruit and employ a personal assistant to do this because she wanted to choose who it is. She thought it would be hard to get someone to do the work for such a small number of hours, but the independent advice agency helped her find someone.
- One of Jaynie’s friends went for training along with the Personal Assistant, so she can be a back-up person and come in when the PA goes on holiday. Jaynie is paying her friend in the same way as the PA for any work she does because they both want to keep the role clear.
- Jaynie’s friends are helping in other ways, such as giving her lifts when they go out together and helping her with shopping. They are doing this as friends and there is no money involved.
- At first the plan was to get the care service to do ironing. Then Jaynie realised that an ironing service her neighbour used would pick up and bring back the ironing at a lower cost.
- Jaynie agreed with the social worker she could use the money she saved for extra help at home when her parents come to stay with her.
- She also changed the taps in her bathroom and kitchen to ones that are easier to use, which helps her be more independent.
At the moment Jaynie is paying towards the cost of the support services. She feels it is worthwhile as it gives her more reassurance, knowing that everything is covered, and she is feeling more like her old self again. It is also part of looking ahead. If Jaynie needs more help in the future it will be easier to increase or change some parts of the support now it is in place. Jaynie also knows that the amount she pays towards it will go down when she is no longer working and has less income.
- Don’t rely on clinics and other health services to tell you about other types of support. Jaynie had been going to a clinic for years and assumed they would tell her about the help she could get, but she felt they just concentrated on the symptoms and managing her condition. Health services might be different where you live, but it is best to check these things for yourself.
- Try not to decide about care services and support with personal care when you are feeling down. There have been times when Jaynie has been upset at the impact of my illness. It is much harder to plan what you need when you are upset about what is happening and can’t think straight.
- Get the people who care about you involved. All the information Jaynie read talked about her ‘carer’, which she thought meant her parents who are down as next of kin. But for Jaynie it is her girl friends who have become the most help.
- Think about the ordinary solutions. They can make your support money go further. It also helped Jaynie that the ironing service felt ‘normal’ – just someone getting a bit of practical help.
- It’s worth checking what help you can get while you are still in employment.
The Scottish Personal Assistants Employers’ Network (SPAEN) gives good information and advice to people who want to employ a Personal Assistant.
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