Employment and Support Allowance (ESA)
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Discuss extra costs for disabled people and families

Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
Hello I’m Debbie, and I work on Scope’s helpline. My lead role is Benefits, Finance and Housing. I speak to people all the time who tell me they’ve had to pay over the odds for a bit of essential equipment. 

We know that extra costs are something that disabled people and families with disabled children face every day. And the Extra Costs Commission is a year-long independent enquiry that hopes to start changing that. We want to keep highlighting these issues and supporting people through them. 

So, do you need any financial advice about how to handle these extra costs? I can help you with benefits queries, advice on where to go for grants, and point you to places in your local area that could help or give you a better deal. 

I’ll do my best to answer all of your questions and look forward to hearing from you! 


  • Nick WildNick Wild Member Posts: 1
    I often have difficulties with using public transport, so I have to pay for taxis. The cost soon mounts up. I also get through certain clothing really quickly.
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering

    Hi Nick,

    Thanks for your comment. Taxis and clothing are two of some of the most talked about 'Extra Costs' and we hear from people all the time who are affected by these, and many other extra costs.

    The Extra Costs Commission interim report launches this week. This is a big moment so check back with us this week to learn about the Commission's findings so far!

    Also, if you have any tips for the rest of the community on how you manage these extra costs, please share them with us.

    Best wishes


  • kloweklowe Member Posts: 1 Listener
    I live on my own and due to my disabilities use extra water but at the moment I'm paying £94 per month to United utilities is there anything I can do?
  • Susan BullockSusan Bullock Member Posts: 2
    I am a concerned neighbour of a 61 year old single gentleman who was previously long term unemployed with little or no work based skills so will perhaps have very little prospects of obtaining suitable work especially due to his recent health issues .He has had an emergency total colectomy and now has an ileostomy (stoma bag).Although he has claimed ESA he has at present been awarded only the working capability group and really expects that he will perhaps be back on jsa in the very near future if the dwp has their way as atos is pestering again even though he has only just been assessed and come off the assessment rate of ESA.He has been told by a DWP visiting officer that in her opinion  he would be ineligible for PIP as he is learning to manage his own stoma care.The extra costs involved for ostomists is extra water and extra fuel costs for hot water for bathing and washing clothing and bedding more frequently than non ostomists. But these costs would not be taken into consideration in JSA.
  • SarahLouSarahLou Member Posts: 2
    I have a neurological illness (chronic migraine disorder) which causes a million problems but the main ones are constant severe pain, fatigue, disorientation and short-term memory loss. I have to pay extra for ready meals because I can't safely cook, have to get taxis everywhere, always have to have the heating on, need a lot of health stuff like ice/heat packs not available on the NHS, have to pay someone to do my laundry & housekeeping because I can't do it myself, etc etc etc. I've applied for PIP but it's been over 12 months, still nothing, and I'm now waiting on an appeal hearing which will be June at the earliest. Do you know of any charitable grants available to people with my condition? I'm 21, female, in full-time education and also have depression.
  • Laura BradshawLaura Bradshaw Member Posts: 1
    edited March 2015
    Buying heat/cold pads for pain, buying other things that might ease the pain, buying shoes constantly as my splint ruins them.

    Taxis, buses that are before/after my bus pass works.

    Foods to meet dietary needs means spending more

    Transport for hospital visits


    Mobility aids not covered by support services

    Need heating on more so joints do not sieze as much

    So many extra costs....

  • Gillian JonesGillian Jones Member Posts: 3
    There is 3 of us in my house that are disabled but only i can get a bus pass which i use all the time but have to pay for my daughter cos shes 15, it is hard getting the clothes ready for her as she has aspergers/ depression
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    edited March 2015

    Hello Klowe,

    Wow £94 a month is a lot to find each month for water. Do you have arrears on the account or is the monthly figure based on your usage?

    I've checked with United Utilities and they are currently trialling a Support Tariff in certain areas which could be helpful if you live in one of the trial areas. Find more information about this tariff on the United Utilities website http://www.unitedutilities.com/support-tariff.aspx . They also have an Arrears Allowance Scheme for people struggling with water debt http://www.unitedutilities.com/Arrears-allowance-scheme-home.aspx

    For customers with a water meter who use large amounts of water for essential purposes, the Watersure scheme could be worth looking into http://www.unitedutilities.com/Watersure.aspx

    Finally if you are in financial hardship, you might be eligible for help from the Trust fund which could provide a one off payment to help you get on track again http://www.unitedutilities.com/trust-fund-home.aspx

    Hopefully this will give you an idea of the help that is available to you. All water providers will have similar help schemes so anybody else struggling with their water bill should make enquiries with their provider to see what help is available. If you don't want to talk to your provider, get some advice from the Citizen's Advice Bureau or a money advice service. Alternatively view Scope's pages about utility debt http://www.scope.org.uk/support/disabled-people/money/utility-debt

    I really hope this information helps klowe, if you need further advice, do get in touch again.

    Many thanks

    Debbie :)

    I hope this helps.  

  • jackiericejackierice Member Posts: 3
    I have a rare neurological condition and use all of my DLA to pay for care. I am retired, and have £100 a week left to pay for food, bills and clothing. Entertainment is a thing of the past as I cannot afford cabs/taxis any more! I get a direct payment for night time care, and contribute £307 per month towards that. The rest of my DLA funds my day time care. I am allowed £10 per week for 'disability related expenditure' and I would need to produce receipts to get any more, which is a logistical nightmare for me! DLA (in written law) is meant to enhance the life of the disabled person. It does NOT have to be used to provide care e.g if you don't have carers you can still get it. I, therefore, do not feel equal!
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    edited March 2015

    Hi Susan,

    Sorry to hear
    about your neighbour, it sounds as though he could do with some face to face
    advice from a welfare benefits adviser.How long ago did he have the colectomy
    and how long has he been managing the stoma bag?

    If the
    following descriptor applies to him he will be assessed as having a limited
    capability for work related activity which means he should be placed into the
    support group.

    ‘8. Absence
    or loss of control whilst conscious leading to extensive evacuation of the
    bowel and/or voiding of the bladder, other than enuresis (bed-wetting) despite
    the wearing of or use of any aids or adaptations which are normally, or could
    be reasonably be, worn or used

    At least once
    a week experiences:

    1. Loss of control leading to
      extensive evacuation of the bowel and/or voiding of the bladder; or;
    2. Substantial leakage of the
      contents of a collecting device, sufficient to require the individual to
      clean themselves and change clothing.

    If this
    descriptor applies to your neighbour then I would advise him to get some face
    to face advice and help with a challenge. If you could tell me roughly where
    your neighbour lives I will search for services that can help him in his area.
    I cannot guarantee that he is going to qualify for the support group but it
    really does need following up.

    As for PIP it
    is certainly worth getting some more advice about this benefit. The website www.benefitsandwork.co.uk has
    a PIP self- assessment test where you can look at all of the activity
    descriptors and self- score. This will give your neighbour an indication of
    whether he would qualify for PIP. Again it is probably worth getting some face
    to face advice about this.

    absolutely right about the extra costs involved for ostomists and these extra
    costs are affecting disabled people and families with disabled children

    The interim
    Extra Costs Commission Report has now been published and can be viewed on the
    Extra Costs website www.extracosts.org orhttp://www.scope.org.uk/campaigns/extra-costs-commission

    I hope this
    information helps.

    Kind regards


  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi SarahLou,

    I'm really sorry to hear that you've been waiting so long for PIP. We've heard from lots of people since PIP came in who have experienced extremely long waits. You say that you're waiting for an appeal hearing, does this mean that you've had a decision which was not in your favour? I would be keen to know what stage you're at and whether you are getting any help with your claim.

    Our advice to people who are experiencing long waits for their PIP claim to be decided is to contact your local MP and raise this issue with them. In some cases applicants can apply for compensation if there has been an unreasonable delay, you've been given wrong advice or you've lost money. You should not lose out financially or suffer undue distress. Compensation payments are made on a case-by-case basis and there is no automatic right to compensation payment. Anyone who thinks that they may have a case for compensation should seek further advice from DIAL or Citizen's Advice Bureau who can assess the case.

    I do not know of any grants specifically for people with your condition but www.turn2us.org.uk has a great grants database with over 3000 charities providing grants for a variety or different purposes so it's worth having a look on the website and seeing if you qualify for any grants there.

    May I ask what you need a grant for? There could be other sources of financial help available and it's always best to exhaust these options before applying for a charitable grant. If you could let me know I'll see if there is any help available for you.

    Best wishes

  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi Laura Bradshaw,

    You're absolutely right, the extra costs you've mentioned have come up time and time again. We hear from people all the time who are waiting for PIP claims to be decided or have been reassessed from DLA onto PIP and have lower or no entitlement. Regardless of whether a claimant is due a backdated payment, this is not helpful for the here and now is it?! We have heard all kinds of stories about the debt people have accrued due to these extra costs, it's really quite shocking!

    You mention that you have to pay for prescriptions; it's worth checking to see if you can get any help with these costs. One way of making this more affordable for people who are not entitled to free prescriptions is to purchase a pre-payment certificate which can save you money. More information on the NHS website 

    Thanks for joining in the conversation with us. If we keep talking about these issues, together we can raise more and more awareness of the problems and hopefully bring these costs down!

    Best wishes
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi Gillian Jones,

    Are any of your household receiving DLA or PIP to help with these extra costs?

  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi Jackierice,

    You've made an excellent point there and this again is something we hear from people frequently. Another example is people who have been affected by 'bedroom tax' or shortfalls in their housing costs. Often people have no other choice but to use their DLA/PIP to meet their housing costs. This then means that they do not have the funds available to even start dealing with all of the other extra costs. You're also quite correct that about the logistical nightmare involved in providing receipts and evidence for disability related expenditure. Do you have any support networks that could help you with this? It simply is not right that people are not getting money they are entitled to because the system is too complex and it's too hard both physically and mentally to cope with, not only getting the benefits and care in place but keeping them in place.

    It's also an absolute shame that entertainment is a thing of the past for you. We're all entitled to some leisure time. Are there any local activities you can participate in, that doesn't require transport, or transport can be provided for free?

    Thanks for joining in the discussion.

    Best wishes

  • jackiericejackierice Member Posts: 3
    Thanks for your reply Debbie. My entertainment is mainly home based nowdays. I do have a wonderful family, 3 sons and 5 grandchildren who have all bought houses that are accessible to me. We do party!  My youngest son lives in Ireland, so I have not been able to afford to go there at all for 18 months. That counted as a holiday for me. I also used to go to the 60s music festival weekend at good old Butlin's every year but, as I need to take a carer with me (who I would have to pay for, of course!) I can't afford that this year. DRE only allows for certain types of holiday - like an accessible, disabled persons hotel or something - which is fine and dandy if that's what you like to do. I'm a fun loving, musical, party animal type so my type of holiday doesn't count, ha ha! I like live music, but it's no fun coming back on the bus at 2am! That's the problem, my lifestyle doesn't equate to the stereotypical 'Disabled Person'....I didn't mean to give the impression of a lonely, sad, old, disabled pensioner. I enjoy reading, painting & drawing and, of course, music - I would love to be able to access the theatre too, which sadly, is now out of my price range. Also, my beloved parents are buried 100 miles away in Gloucestershire. I used to pay/provide petrol for a driver, but no more! I have to wait until one of my sons (who all work very hard, incidentally) can take me. I do usually manage to get there 2 or 3 times a year though, so I mustn't moan too much! I don't like moaning as it doesn't do the soul very good but, having paid my taxes for 35 years before my 'medical accident' disabled me, it does peeve me somewhat to have to give up some of the things I love most. But, hey ho, that's the way it goes I guess! As far as the receipts for DRE go, most of my shopping is done online, so receipts would have to be printed. I think they like 4 weeks worth every 6 months. They don't allow for printer ink either....Doh!
  • Trish DuffyTrish Duffy Member Posts: 1
    edited March 2015
    My daughter Kaitlyn, is 7, she is autistic.

    We get HRC- LRM DLA, although the social worker has told me to try for the higher rate Mobility.

    This really helps with the cost of having a disabled child, however before we managed to get an assessment through social care, school and integrated services really expected this money to stretch much further than it was capable of doing!

    Even scope's own respite service for disabled children through short breaks is costly when you add it up. £2.50 per hour, plus activity and fuel allowance meant I was paying about £20 a week for 4 hours respite.

    Sensory items are bumped up as soon as 'special needs' is added to the label, and they are easily broken by a child who doesn't quite get pressure right and can be heavy handed. Some things have to be replaced regularly, like chewigems.
    Other sensory items are just expensive, sometimes I feel only a lottery win would allow me to shop in some of these sensory catalogues.
    Then comes the electric bill for having a bubble tube, soft sensory lighting, and other light up sensory items.

    Kaitlyn can physically put one foot infront of the other, but due to the complexity of her autism and sensory integration difficulties, at times she can't mentally go any further without being in distress. We have a special needs buggy for round town from NHS- which didn't include things like a sensory Canopy or rain cover, but in order to take Kaitlyn to wooded 'off road' areas we would have to find £640 for an all terrain three wheeler special needs buggy.

    I can not even begin to explain how many Velcro backed laminated pictures I have around the house. Or how many social stories I've printed. Pretty sure our local stationers had to increase the order of canon printer ink and laminator pouches when I started shopping there!

    My daughter goes to a special school in the next county as there was nothing suitable in our county... The petrol costs are obviously a lot more to get to parents evenings, but we also have regular therapy and IEP meetings which I have to get to.

    There are absolutely loads of additional costs to having a disability , these are just off the top of my head.
  • SarahLouSarahLou Member Posts: 2
    edited March 2015

    Hi Debbie

    Yes, both the first decision and the mandatory reconsideration awarded me 0 points in every category - unsurprising as they didn't seek any appropriate medical evidence and didn't do a face-to-dace assessment (despite Capita decision I'd have an assessment at my home - when I contacted my MP and complained about the delay in getting an appointment, their response was to close my case without doing an assessment and send it to the DWP for a decision). When I needed more than 28 days to try and get evidence myself for the mandatory reconsideration, I phoned for a deadline extension and they ignored my request and did the MR anyway. I really don't like the DWP! So now I've appealed and am trying to gather evidence as best I can when I'm in agonising pain all day every day. I don't have any help with my claim, I'm a law student so I'm doing it all myself.

    Interesting about compensation where there's been an unreasonable delay - I've definitely lost money, I applied for ESA and Housing Benefit but can't get them until I get PIP so the delay has cost me many months' worth of those - I will look into this further, thank you.

    A grant would be for general living expenses, hiring a carer, some aids for around the house (like one of those kettles you don't have to pick up) and potentially a mobility aid. My overdraft is already at maximum and my university's hardship fund rejected my application - where else should I look?

    Many thanks


  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi Jackie,

    Wow, we've got a lively one here, we'll have to keep an eye on you!  You've made such a good point about holidays and the need to pay for carers to go along too. The prices can be incredibly expensive and that's before you've even looked at accessible accommodation. All of these financial barriers make it so very difficult for disabled people and families with disabled children to participate in normal everyday things that the rest of society takes for granted. Another good point you made was that your lifestyle does not equate to the 'stereotypical disabled person'. We hear this a lot and it's quite disappointing in these modern times that we still have stereotypes and numerous barriers.

    It sounds like you have a wonderful close knit family despite the distance though so carry on with partying, I admire your positive outlook on life!

    For days out and trips to the theatre, cinema etc it's always worth browsing sites such as http://www.moneysavingexpert.com/deals/cinema-and-theatre#travel-and-days out 
    The Money Saving Expert website is genius in my opinion, such a range of money saving deals. 
    Also http://www.hotukdeals.com/ can be very good for picking up some very good discounts. Last year I picked up tickets for a safari park for £1 each saving a fortune in the process.
    Cashback websites such as https://www.topcashback.co.uk/home can be a great way of saving money. You get cashback for purchases which you can save up and then use to buy things for free. It's very useful for things that you have to buy like car insurance or utilities. Using sites like this can benefit you quite considerably so it's worth checking out. I refuse to pay anything these days until I've done all the research and made sure I'm getting the absolute best price! I hope that some of these ideas might be useful.

    Have a great day!


  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hello Trish,
    Thanks so much for taking the time to join in with the discussion and sharing your experiences. I have nothing but respect for parents like yourself who not only provide wonderful care to your children but you also have to be financial geniuses and legal experts in getting things done and in place and then keeping them in place.
    Before you apply for the higher rate of DLA mobility, get some advice from a Welfare Benefits specialist who can support you with this. If you would like me to look for some services which can help with this, let me know. Unfortunately Benefits advice is much harder to come by these days since legal aid was cut and many organisations have had to close due to lack of funding. Add to this the numerous changes to the welfare system and it's a bit of a nightmare out there at the moment, so please do get some support with this.
    You're absolutely spot on when it comes to sensory items and how expensive they are, not least when you add the cost of electricity to things as well. Does your local authority have a 'Sensory Toy Library'? In some areas you can borrow sensory toys for free so do check with your local authority to see if they have a scheme running. The charity Cerebra has a wonderful library where you can borrow books and sensory equipment for free and it's all done by post http://www.cerebra.org.uk/English/gethelp/library/Pages/default.aspx
    Of course there's always sites such as www.ebay.co.uk for used equipment and www.disabledgear.com for instance. I'm pretty sure that if you sat down and listed every single extra cost there would be a very, very long list. You mentioned petrol for instance, this is a cost which has rocketed over the last few years. Ok we're now back down to some more reasonable prices but how long for? I've found that the Tesco Fuel Save promotion is very handy. You can get up to 20p a litre off your fuel each month (providing you've spent enough to qualify). The last time I filled my car I used my fuel save points and was paying around 90p a litre. It was like going back in time! Find out more about Fuel Save here http://www.tesco.com/fuelsave. Most of the supermarkets have petrol promotions from time to time so it's worth shopping around and seeing who offers the best deals. You can also find out who is selling the cheapest petrol in your area by using the website Petrol Prices.com http://www.petrolprices.com/. You will need to register to find out exactly where you can find the cheapest petrol but it's worth knowing these things, although it is normally quite difficult to beat the supermarkets when it comes to petrol. The Extra Costs Interim Report which was released yesterday has called for more evidence . If you have time do read through the report and get in touch with the Commission with any ideas you might have. Read the report at www.extracosts.org.uk or http://www.scope.org.uk/campaigns/extra-costs-commission
    I hope some of this information is useful. Thanks so much for sharing your story with us. I love the picture of your daughter by the way!

    Have a great day!
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi SarahLou,
    I'm very perplexed and disappointed to hear that a decision has been made without medical evidence or a face to face assessment. Is it possible that the case was closed because there was no evidence or assessment? Either way I feel your frustration as I'm sure many of our community members do too. Let me know whereabouts in the country you live and I'll have a search for services in your area which can hopefully support you with the appeal. I'm glad to hear that you're a law student, this will come in handy and hopefully you will have access to resources to help you through this. I've mentioned before the website www.benefitsandwork.co.uk and they have a number of guides regarding PIP including the appeals process. PIP is a major problem at the moment and the lack of advice available is causing real problems on the front line. More information about the DWP's Service Standards is available on the government website and it's worth having a read through https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/381015/dwp032-112014.pdf Disability Rights UK has a Disabled Students helpline and they should be able to provide you with some further guidance about the ESA and HB, but you're right, the PIP would be most helpful because as a full time student you don't automatically qualify for ESA or HB unless you fit certain criteria. http://www.disabilityrightsuk.org/how-we-can-help/helplines/disabled-students-helpline
    For grants you can try www.turn2us.org.uk and search their database of over 3000 charities. If you have urgent financial needs Local Welfare Assistance might be able to help with some of those costs. CPAG have a great tool to help you find your local council's scheme http://www.cpag.org.uk/lwas . Local Welfare Assistance Schemes are designed to help people who are in urgent need following an emergency or unforeseen event. They replaced Community Care Grants and Crisis loans for living expenses in April 2013. You would normally need to have exhausted all other options before approaching your council's scheme but do check with your council to find out what their criteria for the scheme is. It's probably going to be difficult to get grants for hiring a carer because this provision is usually met through DLA or PIP but for equipment and mobility aids, you might have more success. Good luck with things and thanks for getting in touch and sharing your story with us.

    Best wishes
  • Susan BullockSusan Bullock Member Posts: 2

    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

  • Jane8662Jane8662 Member Posts: 3
    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 CathlainMaria Ni Cathlain Member Posts: 1
    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 

  • Jane8662Jane8662 Member Posts: 3

    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_ScopeDebbie_Scope Member Posts: 947 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_ScopeDebbie_Scope Member Posts: 947 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:

    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_ScopeDebbie_Scope Member Posts: 947 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_ScopeDebbie_Scope Member Posts: 947 Pioneering

    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

  • 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.
  • DonnaGrDonnaGr Member Posts: 1
    edited March 2015
    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_ScopeDebbie_Scope Member Posts: 947 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_ScopeDebbie_Scope Member Posts: 947 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
  • emma001emma001 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
  • emma001emma001 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
  • Bec126Bec126 Member Posts: 3
    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.
  • Debbie_ScopeDebbie_Scope Member Posts: 947 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

  • carerfor2decadescarerfor2decades Member Posts: 9
    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_ScopeDebbie_Scope Member Posts: 947 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
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