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Discuss extra costs for disabled people and families

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  • Susan Bullock
    Susan Bullock Community member Posts: 2 Listener

    Thankyou for your reply Debbie.

    My neighbour only had his unexpected colectomy/ileostomy in December 2014 and is still learning to manage and deal with the physical and emotional aspects of this (As he has always relied on buses and would not be able to afford taxis to get around),he hasn't even tried to venture out on public transport as yet due to lack of confidence and feeling safer if a toilet is not too far away ) he is receiving prescription drinks to help him put back some of the 3 stone of weight he has lost over this past year and build up his strength,  so was very surprised that the DWP placed him in the ESA working capability group so soon after this life changing event. He also has the added problem of having loss of sight in one eye due to an untreatable detached retina which makes his stoma care a little more lengthy procedure as his stoma is on the same side of his body as his poor sighted eye. He does therefore experience frequent leaks that he needs to attend to promptly. Due to his poor financial position prior to this surgery he doesn't have a washing machine to enable him to quickly launder clothes towels or bedding ,so has to wash and wring by hand he is also prepayment meters which are more expensive). I have arranged for a welfare rights worker to visit him to perhaps help him challenge the esa decision and also help him fill in this new capability for work questionnaire which has recently been sent to him despite only just having been assessed as a paper assessment by Atos/DWP in February 2015 . He hasn't even been asked to attend a first interview at jobcentre plus as yet in regards to the ESA Wrag group they have already assessed him as belonging to, so I cannot understand why they have sent a new form for him to submit. It seems that he is being asked to jump through as many or perhaps even more hoops than  he was asked to do whilst in receipt of income based job seekers allowance.He has experienced many sanctions over this previous year and was at one time threatened with eviction from his home due to the sanction knock on effect of removal of housing benefit, due to him feeling too ill to attend the jobcentre at times over the past year, but no one picked up on the fact this man was quite seriously ill (which anyone with an ounce of sense would have seen quite clearly just by looking at him  ). He is obviously very worried that he will experience more of these sanctions in the future. However I find it quite sad that this man has been so worn down by the system that he says that he would be quite happy with just the assessment rate of ESA (which is exactly the same as Jobseekers allowance (not much for a single person never mind a single person with extra costs due to disability) as long as the DWP would just leave him alone. I fear that he would just give up if sanctioned and placed on a paltry hardship rate again in the future.  As someone looking in ,who has never been in the position of ever having to depend on the benefits system at all I am really disgusted in how vulnerable people in this country are being treated at present.  

    Kind regards

    Sue B


  • Jane8662
    Jane8662 Community member Posts: 3 Listener
    My biggest gripe about extra costs is continence products. My son does get pads provided by the NHS, but they are poor quality since they changed the product a couple of years ago. Also, they limit the number of pads they provide, which is not sufficient for my son's needs, despite us providing evidence (which they accept) of the number of pads he needs. Is this a local issue, or is there some rule or policy nationally about the quantity of incontinence products someone can have. They also do not provide disposable or washable bed protectors or wipes. I reckon we spend at least £500 a year on extra pads and disposable bed mats, and probably more since the NHS locally changed the brand of pads as he has to use more because they are such poor quality.
  • Maria Ni Cathlain
    Maria Ni Cathlain Community member Posts: 1 Listener
    Jane8662 - i know its a cost issue with the nhs prescribing disposable bed mats as each pack costs the nhs approx £90, i end up having to buy them too so what ive ended up doing is poundstretcher sells puppy training pads which are about an inch smaller than the nhs ones all the way around but do offer some protection to save the bedsheets having to be changed so often as the mats take the pressure.  If you spent over £20 online you get free delivery 


  • Jane8662
    Jane8662 Community member Posts: 3 Listener

    Maria Ni Cathlain, many thanks for the advice about mattress protectors, I will look online at poundstretcher. At the moment I buy them on line, along with pads from medical supplies companies, I try to shop around for the best price or in an emergency get them from our local co-op pharmacy. I am speaking with the continence nurse today and I am going to ask about a personal health budget to see if it is better value for the NHS (and our family) this way. I had always assumed that the NHS could get the pads cheaper than me because they "buy in bulk", but you have got me thinking - all the added costs of logistics, administration and so-on might make them really expensive. I have been shocked at the costs of medical supplies like plastic syringes when we have been running out and I have looked on line..

  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Hello Susan,

    My goodness, what a story! This is something we're hearing time and time again. From what you have said, it certainly does not sound as though he should be in the WRAG at all. Thank goodness he has someone like you looking out for him because there are many people who don't have such support and slip through the net. You've done the right thing by organising a Welfare Rights Adviser to see him. They will be able to assess his situation and give him the help he needs to sort his ESA out. It's also worth finding out some more information about PIP and whether he would qualify now or in the future depending on how his condition stabilises. There are all sorts of issues right now with both ESA and PIP including backlogs. There is a lot of confusion out there and it is incredibly difficult to get definitive answers to questions. 100% of Welfare Benefits advice was taken out of Legal Aid in 2013 so it has become even more difficult to get help and in some areas of the country, impossible. 

    With regards to his lack of washing machine, this might be something that the local authority can help with. In April 2013 Community Care Grants and Crisis Loans were abolished from the Social Fund. Funds were given to Local Authorities to administer their own local schemes and they are known as 'Local Welfare Assistance' schemes. They are intended for people who have no other source of help. Based on what you've told me, it sounds as though he could qualify for some help from his council. You can find out more about about this and look for your local scheme on the CPAG website http://www.cpag.org.uk/lwas. It's definitely worth finding out more.
    As your neighbour has been at risk of eviction, it would also be worth finding out if your Local Authority has some kind of housing floating support service which can help support your neighbour to reduce the risk of eviction in the future. They can help with some of the practical issues and are a very good source of support. Hopefully your council has a scheme. 
    If the threat of eviction arises again, check with Shelter to see if they have a service in your area which can help. www.shelter.org.uk. Most county courts have court desk advisers on possession hearing days so if the matter ever goes to court and he cannot get advice beforehand, there should be someone at the court to help, although there is no guarantee of this, but it's another thing to check out.

    I hope that your neighbour is able to get all the help he needs. Well done to you for supporting him and helping him through. You and many like you are our unsung heroes, looking out for our vulnerable members of society. I cannot disagree with you about the system at all, some elements of it are as clear as mud. There have been so many changes in the past few years and it's really hard to keep up. Even the professionals struggle at times! 

    Best wishes
    Debbie


  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    edited September 2015
    Hi Jane8662,

    Thanks for joining in with the discussion. The supply of Continence products is an issue that comes up quite regularly here at the helpline. Every Primary Care Trust (PCT) in the country has its own guidelines and in our experience the quantity, quality and eligibility for supplies will depend on the priorities and resources of that authority. This seems to result in 'postcode rationing', in which incontinence product provision is often limited by local financial restraints and the rationing of supplies appears to remain widespread. There are some organisations that specialise in advising on incontinence issues and it would be worth checking with them to see if they can provide some additional information. ERIC: http://www.eric.org.uk/Help/home
    Bowel and Bladder Foundation:
    http://www.bladderandbowelfoundation.org

    Additionally it might be worth contacting Patient Advice and Liaison Service (PALS) to see if they can provide you with some assistance. If enough people are experiencing similar issues with the quality of the products their local trust is providing then this could prompt a review, however with increasingly tight budgets it's probably quite unlikely but still worth checking.

    Thank you for sharing this extra cost with us.

    Best wishes

    Debbie
  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Hello Maria,

    What an interesting work around. Is there much difference between these and the NHS provided products? I've had a quick look on the poundstretcher website it does not say what size they are so I can't compare them with other products on the market whether specifically designed for continence in adults and children or not.

    It's very interesting to hear workarounds like these and I welcome hearing from people about where they source continence products and whether we can identify which providers are best for cost and quality so that we can share this information amongst the community.

    Thank you for getting involved with this discussion and sharing your tip with us.

    Best wishes
    Debbie
  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Jane8662,

    With regards to a Personal Health Budget for continence products, please let us know how you get on with the continence nurse today. If suitable products can be sourced using a PHB and it works out cheaper then this could be the way forward for many families who need these products. It might be worth talking to PromoCon which has campaigned for improved continence services. They also have a helpline providing confidential and impartial advice, online resources and a shop. I've not had the opportunity to go too in-depth to their shop but certainly it seems they really do understand this issue. http://www.disabledliving.co.uk/Promocon/About

    Good luck

    Debbie
  • Anne-Marie MacNeill
    Anne-Marie MacNeill Community member Posts: 1 Listener
    Continence products - My son grew out of Pampers size 6 which was supplied (extra was brought tho) by the NHS four years ago.  We tried a number of products but, my sons sensitive skin was effected so, I decided to drop it as we were refused - I was spending 11.99 plus postage on 20 nappies size 7.  Last year I decided to fight the system and after having nurses coming out, trying a range of products and taking evidence of poor condition of my sons skin caused by the pads they gave in (after 5 months) and brought the product I had been using but, of course had to top up.  Again, my son has grown out of the pads and I am now so, not looking forward to another fight to get the supplies my sons needs for his comfort - I just wanted to share as it pays to stand your ground and fight but, I also know how exhausting it is.
  • DonnaGr
    DonnaGr Community member Posts: 1 Listener
    edited March 2015
    Hello
    Could you tell me if there are any grants available for disabled people moving house.
    I'm about to move into a disabled accessible house as I broke my spine in multiple places last year and was diagnosed with early onset severe osteoporosis - I use a wheelchair as walking is difficult and I receive PIP (however when this was assessed I was walking using crutches so I got the standard rate and now I'm wheelchair bound ) the home I will be moving into wont have any carpets and I have no disposable income as I have a two year old daughter plus three teenage girls, so any advice on grants etc would be a great help as I am terrified of falling over on a concrete floor

    I am a full time student and mother so i don't work right now
    Thank you
  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Hi Anne-Marie,

    Thanks for sharing your experience. What a great achievement you had in getting the right product for your son and it does go to show that if you fight and stand your ground you can eventually access the right products. However, this is one of many fights families with disabled children go through each day in getting the help they are entitled to. How do you and other families keep up the strength when all of your time and energy goes into caring for your child/ren? I hope that this time round you don't have to fight like you did to get the right product for your son. Please do come back and let us know how you get on.

    Best wishes
    Debbie
  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Hi DonnaGr,

    You could try getting in touch with your local authority to see if they can help you through their Local Welfare Assistance Scheme.

    Local Welfare Assistance Scheme are designed to help people who are in urgent need following an emergency or crisis. The schemes replaced Community Care Grants and Crisis Loans in April 2013. Depending on your circumstances you might be able to get some help under this scheme. Each local authority sets their eligibility criteria but generally you must be in receipt of an Income Related benefit and you may need to have exhausted all other financial options before applying for a grant. Find details of your local authority's scheme on the CPAG website http://www.cpag.org.uk/lwas. I cannot guarantee that you would be able to get help with carpets and you do need to check the criteria with your local authority.

    Turn2us has a database of over 3,000 charity funds. You can search their database to find the funding you require on the website or by calling 0808 802 2000.

    Find out more about help with moving costs and deposits on our website http://www.scope.org.uk/support/disabled-people/housing/deposit

    Another query that comes up from time to time is the cost of decorating a property because as we know paint is not cheap, however there is a fantastic source of help for this (subject to where you live and whether there is a scheme in your area) and it is called Community RePaint.
    Community RePaint schemes collect reusable, leftover paint and re-distribute it to individuals, families, communities and charities in need. Fabulous idea and a great way of recycling your unused paint, which if we're honest, we usually all have some laying around somewhere. Find out more about this scheme and whether you have one nearby by visiting the Community RePaint website http://www.communityrepaint.org.uk/

    Good luck with the move and I hope that you're able to get the help you need.

    Best wishes
    Debbie
  • emma001
    emma001 Community member Posts: 4 Connected
    PLLLLZ I beg of u to go to the "Who Do You Help?" question in another forum (soz don't know which, think ask expert or something. I've 100+ ppl wanting to know answer n need to spread word. I'm going bk to my Question as have loada charities that help disabled kids but need to inform public asap of who to donate to RE: gen' adult disabled. Thanks, emma
  • emma001
    emma001 Community member Posts: 4 Connected
    It's in "Talk to a community adviser" plz, I've a 1 million+ abled bodied ppl I can reach tonight. I'm aware "off topic" but need ur help here. I'm really sorry to get in way of a great discussion but disabled ppl of all types r relying on me (Guessing coz I'm mouthiest person they know, lol). Does this charity help adult disabled ppl of all disabilities? That's all I need to know. emmaxxxx
  • Bec126
    Bec126 Community member Posts: 2 Listener
    Hi,
    Im not sure if I have posted this in the right place but I am a student living at university at the moment. However I am worried about the summer as I do not have a suitable place to live. Neither my parents or extended families house is wheelchair accessible and I do not have the finances to cover 14 weeks in university accommodation during the summer. I have spoken to uni who said there are no funds that can help me.
    I was just wondering what support there is out there.
    Thanks
    Bec
  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Hi Bec126,

    Thanks for your question and welcome to the Community.

    You could try Disability Rights UK Disabled Student's helpline and see if they have any information which will be helpful http://www.disabilityrightsuk.org/how-we-can-help/helplines/disabled-students-helpline

    If you would like to call myself or my colleagues at the helpline we can have a chat with you and find out a little bit more from you and see if there is anything we can suggest. 0808 800 3333.

    It might also be worth getting in touch with www.turn2us.org.uk and searching their grants database to see if there are any grants you can apply for to help with your accommodation over the summer.

    I hope this starts you off in the right direction.

    Best wishes
    Debbie

  • carerfor2decades
    carerfor2decades Community member Posts: 9 Connected
    Hiya Debbie, Hiya All. In our house the cost of heating and hot water is up there with some stately homes. But it's the unexpected costs that just add up and up, my darling daughter is 20 and a little less than graceful in her movements, which results in lots of things being broken, lots of times. Bless her cottons, but she cannot just sit on the loo, she manages to go on her own for the most part but somehow we have to replace the loo seat around every 6-8 weeks. the same with the pull cord for the light in the there. She breaks the flush on a regular basis too and has knocked off the plastic tile edging some many times I have given up replacing it. She often blocks &/or floods the bathroom too. I have just described the bathroom because it easy to get the idea, however she is like this in the rest of the house too, none of it is malicious, her eyesight isn't good and she wants to be more independant and do things like an adult. When you consider similar accidents throughout the house and the price of trying to keep making little changes to things to assist her, the price of independence really adds up.
  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
    Hi there carerfor2decades,

    Welcome to the community and thank you for contributing to this discussion. Heating and hot water and anything energy bills related is a very common extra cost. It's always worth shopping around and keeping an eye on your bills to make sure your energy provider is giving you the best deal.

    It sounds as though you really do have your fair share of extra costs but it's great that you're encouraging your daughter to be as independent as possible despite the costs. Have you had an assessment by an OT to see if there are any heavy duty toilet seats available? Is it the toilet seat itself or the hinges that keep breaking? I completely understand about the flooding issue. I have a three year old at home who likes playing with water a little too much! :)

    We are preparing for the final report from the Extra Costs Commission and this will be launched next month. I'm sure there will be some very helpful recommendations from the Commission. Keep an eye out here and we'll keep you updated.
    In the meantime please keep letting us know about your tips and experiences of dealing with Extra Costs.

    Best wishes
    Debbie

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