Struggling to work full time and live independently — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

Struggling to work full time and live independently

cherri Member Posts: 11 Connected
I'm struggling to work full time and look after my home due to fatigue and pain caused by CP. My boss has said he can't give me part-time hours and I've been looking for part time work for the past year with no success. My letting agent has asked me to move out of my flat as it is untidy and I received a fixed penalty notice from the council as I couldn't get my bin up the steps to the storage area. I did have a cleaner but found this very expensive and difficult to fit round my shift work. I am finding it hard to get another accessible flat with no reference from my current landlord. My parents have suggested I give up my job and move back in with them as they live four hours away and I could not commute to work each day. Has anyone else failed at living independently? How have people coped psychologically when moving back with their parents? I don't know what to do for the best but worried I'll end up in a homeless unit where some of my service users live which could be a bit awkward! Any advice gratefully received!


  • Richard_Scope
    Richard_Scope Posts: 3,178 Scope online community team
    Hi Cherri
    I can completely empathise with your situation. In my experience though, moving back in with my parents was a mistake but it might provide you with the respite and support you need for six months or so. Have you tried to contact any of the local authority occupational therapists to try and get an assessment?
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • cherri
    cherri Member Posts: 11 Connected
    I haven't but my GP has provided a letter of support for an urgent ground floor council flat but there is a very large waiting list at present. I don't have to make a decision about what to do til mid October but I hate the uncertainty of not being able to plan for the future. I worry that my mood will plummet living with my parents and being unemployed as I won't be able to afford to socialize. However, I worry that I'll end up with burnout and compassion fatigue if I have to continue to work full time. :-(
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hi Cherri,

    I'm really sorry to hear that you're struggling to maintain your full time job and living independently.
    Has your employer given you a reason why you cannot move onto part time hours? What sort of work do you do and how many hours a week are you contracted to?

    You mention that your letting agent wants you to move out because your flat is untidy. Has the letting agent served you with a formal notice requiring possession, also known as a Section 21 notice for people with assured shorthold tenancies? Your letting agent cannot simply ask you to move out, they must follow the correct legal procedure in order to end a tenancy correctly.

    It sounds as though you have everything stacked against you right now and this is forcing you to consider moving back in with your parents, which in turn is going to add to the anxiety. It seems odd to me that your employer cannot accommodate a move to part time hours and I wonder what the reasoning behind this is?

    Ultimately your health is paramount but I get the sense that if you were to be able to reduce your hours and get some support at home you wouldn't need to quit your job and move back in with your parents. We can help you explore some options to help you and I hope that my fellow community members will join in this discussion with ideas. I will contact one of our community champions Noah to see if he can add to this, he's really good with issues like this. I will also have a talk with our employment adviser because to me it doesn't sound right that your boss is not allowing you to reduce your hours particularly when it is clearly impacting on your health. I'm not sure that this is lawful.

    Are you getting any help from Access to Work?

    Sorry for all of the questions but I think it would be a terrible shame if you have to give up everything you have worked for.

    I look forward to hearing from you and I really do hope we can all contribute to this discussion and help you make an informed decision.

    Best wishes
  • Noah
    Noah Member Posts: 423 Pioneering
    edited September 2015
    Hi Cherri,

    Firstly well done on working full time, and for living independently in your own place. I so do understand how much of a struggle it can be, to manage work with CP and enormous extra effort that is required to do everything.

    Yes, at times we have to take a good look at things and see how we can make everything a little easier for ourselves so that we can carry on to live as independently as possible and have enough energy to do the things that are important to us like work and socializing.

    Speedincasers suggestion of asking for an OT assessment is a good one, in the area where I live you can just phone a special number and request an assessment.

    You maybe able to get an OT to agree to some extra help, like employing an enabler, let them know how important it is for you to continue working, yet when you get home you are just too tired to carry out certain tasks.

    An OT's report can also go towards the evidence required to support your case to your local council for finding you suitable accommodation. Its great that your GP has written a letter stating you have an urgent need for ground floor accommodation.

    The council have a duty and responsibility to help vulnerable people find suitable accommodation, and yes there maybe a long waiting list, but do not be put off by the council telling you this, they like saying no a few times!

    Are you on the housing list? Have they given you a banding?

    It's worth understanding a few things about how the council work and allocate homes to people.

    Everything is based on "Risk" the higher the risk, the greater the priority. With urgent priority banding it is possible get housed in 3 months.

    So in your case, the following may come into play,

    Risk of falls and injury due to stairs etc
    Risk of social isolation
    Risk of unemployment
    Risk to mental Health

    The council use the the evidence they have available at the time to determine what priority they will give you, this normally takes the form of doctors reports etc.

    It is also possible to appeal any banding decision,

    My advice is keep sending them the evidence, and calling them to ensure they have it, make yourself and your situation as known as possible to them. All councils have to have a housing officer on duty every day, so it doesn't hurt to turn up in person so they fully understand the risks of them doing nothing.

    If you are anything like me with your CP, you probably very dependent on a good nights sleep to allow you to function in the day. It is possibly worth ensuring that your OT and GP add to their report that you require somewhere quiet to allow you rest, and a bungalow would be more suitable for your health needs. As sometimes downstairs flats can be very noisy due to poor construction and neighbors above.

    The charity organisation Shelter also have a wealth of information on their website and a very helpful helpline that is worth calling.

    Hope the above is of some help, and I wish you all the very best, well done seeking out advice - don't give up - We are here to help.

    Kind regards

  • Noah
    Noah Member Posts: 423 Pioneering
    edited September 2015
    I personally would really struggle moving back with Parents after living in my own place for 8 years and I believe doing so, is very likely to have a negative effect psychologically. I'm sure you can find new ways of doing things that will enable you to continue to live independently, without having to resort that option.

    It maybe worth exploring the possibility of different types of supported accommodation, I'm sure your OT will be well placed to advice on this.

    At the beginning of the year I got ill due to pushing myself too hard, and had to take 6 weeks off work. The positive was that the set back has helped me recognize that some changes were necessary to try and avoid it happening again.

    As it is estimated that people with CP use 3-5 times more energy to do everything, we do need ensure that we try and look after ourselves in every way we possibly can.
  • cherri
    cherri Member Posts: 11 Connected
    I'm an Allied Health Professional working in the NHS. I work 37.5 hours a week. I can't work part time as apparently it "doesn't meet the needs of the service and could cause disruption to service users." No-one in my department works part time and some of my colleagues that have come back from maternity leave have had requests to work part time refused. I don't have use Access to Work and if I'm honest I'd be terrified to ask my boss to refer me for it. The last time I asked to go part time and mentioned work was impacting on my health I got suspended for a month as my boss was concerned I might injure myself or a service user despite no complaints being put in against me! I had to get medical reports from my GP, consultants and Occupational Health before I was allowed back to work and was the talk of the department when I came back. I do get unlimited sick leave and find myself having to take a week off every few months to do housework. I have to now put a brave face on things at work and keep myself to myself.
    I've not had an request in writing to move out yet. My letting agent and the woman that actually owns my flat came round and said they want me to move out by end of November and said I will be getting it confirmed in writing shortly. I'm on the council waiting list but have been told it could be 3 years before I get a home as I could afford to rent privately. I'm happy to rent privately but I just can't find anywhere accessible!
  • cherri
    cherri Member Posts: 11 Connected
    I've also had my flexi-hours stopped last week as this apparently is causing issues and disruption to my team. It looks like I'm just going to have to take more and more sick leave as I won't be allowed to go in later if I'm running late due to incontinence or a fall. It's a crazy system!
  • Noah
    Noah Member Posts: 423 Pioneering
    Its great you are employed by the NHS, a respected employer, that has to ensure everything is done correctly and by the book.

    Part time hours doesn't seem to me, to be an unreasonable request, on health grounds.

    Maybe speaking to an employment adviser would be helpful? I imagine there are other job opportunities within the NHS?

    On the subject of housing, it is worth letting the council know that you have been severed with notice, and any other relevant evidence, as this may effect your current housing priority.

    Also remember that even though you maybe able to afford renting in the private sector, it is often not possible to get more than a short term tenancy. Having a more permanent tenancy that is possible from social housing may help your health as you won't have to worry about possibly being served notice again.

    The council has a responsibility is to help people find adequate, suitable housing, they will have access to information of possible properties that are available within the private sector to. Finding accessible accommodation that meets an individuals needs, can be a real challenge.

    Please keep us posted how you get on,

    Kind regards

  • I would like to be moor independent. But I can't live on my own. I can't cook I have panic attacks. Learning difficulties. Could you. Help me
  • VickyS
    VickyS Member Posts: 129 Connected
    Hi cherri,
    It sounds like your employer is not being very flexible!
    Have you tried to discuss job sharing, maybe with one of the new parents who also wanted to go part-time?
    Your employer has obviously made the decision that any changes to full-time work are not 'reasonable' due to the nature of the business and unfortunately the only person who could challenge that would be a judge if you decided to take them to tribunal. It feels like if your employer can survive you taking as much sick leave as you need then they should be able to cover part time hours however it’s always a difficult call when it comes down to what’s ‘reasonable’. If you want to talk to an expert in these matters then contact ACAS ( They will be able to take you through your rights as a disabled employee.
    I know someone further up suggested Access to Work and I also think this would be worthwhile pursuing. It’s you as the employee who had to contact them so you don’t need your work to be able to follow this up.
    Good luck with it all!
    Vicky xx


Complete our feedback form and tell us how we can make the community better.