My Experience's (Trip to bring Nan home)

Everyday living
1

Hi all.

What a gr8 site (wish i found it in 2008) well i look forward to contributing to this forum and look forward to your thoughts.

My mother in law has Ms (degenerative) and for the last few yrs its got worse she wieghs about 17 stonne.She’s had a wheel chair for 7yrs or so, cant walk one leg is basically dead (my version) and the other one is becoming a struggle for her but gladly she can still stand to get in chair (with a heave ho on her pants). for now that is, i’m not gona pansy around hoping things are going to get any easier they aint. Anyway my wife (46) works as a prison officer with crazy shifts, i have 4 kids (15/19/25/27) 2 grandkids (4/6) 2 live away from home and my wifes 3 brothers live away and do there own things, one visits other 2 do eff all, not griping being open as possible to give you my insight and struggles that you will see have altered the ‘NORMAL’ life.

Im a homely guy and believe in close knit familys sitting round table on sundays getting everyone round (we all live in same street) for pizza etc, i dont work because im a gr8 househusband 44 and i did lots within my local community that allowed us to live within our means… Nan (thats how she’s known)

We dont see Ms as an issue its the system of getting things to ease her quality of life that is a disgrace. she has no central heating and since 2008 ive banged drums got my mps secretary involved, pushed her social landlord to sort it and in 2010 it was meant to happen, only there workmen decide to say to her face ’ i aint going in there the place stinks’ (so wish i was there that day) complaint gets us a home visit from 2 muppets( sorry they deserve nothing else) full of apoligies yet tears and heart ache was all we felt, Nans wears pads they knew there might be a smell ffs they came at 8am takes an hr to get her up and ready…that was such a terrible few wks for nan and boy i was raging yet no central heating and silence…Now we decided to carry on as norm hoping we would get heating installed eventually.

Now the OT hadnt been for age’s (didnt understand them or want them @ one point)so we get them to do a review etc and get us a bed for her and adapt the bath. bed was no good she just couldnt get in and/or it was to high even though it had electric movement, for 4 yrs they’ve known she sleeps in a recliner and not had a bath for same period

Last yr my nan went on the waiting list for a move because the social landlord wont make the adaptations and there is no pressure from the OT. she has had 2 offers for ground floor flats which have no disabled facilities and again the landlords wont do adaptions??? they want her out the house cos things aint good for her (thats the only bit we are in agreement) yet they wont do the work to give her a quality of live that eases the problem only in as much as its allowing her to sleep,bathe and enjoy warmth in her own home… whats so wrong with that, i ask?

Nans not a burden (she says she is lol) she’s NAN i h8 the fact we just cant get the sytem to sort things out. its been hard in recent yrs so im hoping now to get a granny annex built in my back garden yet i cant get fianacial support, why you may ask, well nan aint living with us and i cant (it appears) get money to build it… Oh sorry i dont want the money to build it im remortgaging (fingers crossed) i was hoping some part could/would be fiananced… Whether its the Social Landlord or the OT department its been a nightmare and though nan smiles she’s uncomfortable in life she hides the deep hurt all this has caused to her and us yet we strive to carry on as norm knowing we have each other and we are there.To bring nan home is the only alternative in as much as only planning control can prevent her having a comfortable time and she would have access to all the comforts on one level…its been a hard few wks in thought and chasing round who what where how when can help us and yet i finally end up on this site telling my story…its a crazy world we live in and i hope to keep you all updated over the next few wks/months on a 'Trip to bring Nan home 'my story…

hope you enjoy reading i do rant when in mood lol

Paulc

2

Hi, gosh that’s one long detailed story, and not sure I can help much except for one thing, you are building an annex in your garden, do you know that if this work is for a disabled person, it should be able to be carried out VAT free, this should include all the building work, the tidying up afterwards, you will need to sign something but but from what you say that shouldn’t be a problem. Keep us posted. Cheryl:-)

3

Hello Paul,

Wow that took some reading. I do believe there are grants available. Why don’t you ring the MS helpline and ask for their advice they may be able to point you in the right direction.

Janet

4

Speak to AGE UK they have their finger on the pulse of benefits etc (far to complicated for the normal 'man-in-the-street, but a doddle for benefit frausters, they’ve got degrees!)

You could also try getting your councillor/MP involved, it’s surprising how doors suddenly open that have been previously slammed shut.

Good luck on your quest and Nan must be really proud of you (I know I am and I too am a Nan).

Ann

5

Hi all

Few points to clear up for you regarding reply’s (thanks bye the way). I am aware of grants including the Disability Facilities grant, this is only available if nan recides in our house NOW ie can make alterations and adaptations if she was living here, this sadly is impossible (3 bedroom and two kids) and i/she wants the one level and i personally want her to keep some independence thus allowing us to continue ’ as is’. Its not about the right benefits @ the moment as they will all be reviewed when she moves in. As previously highlighted i had my MP involved 4yrs ago and 5 months ago who leaves the work to his Secretary, who i must stress doesnt show a gr8 deal of knowledge and/or commitment. The Ms society gave me a local Company’s details (charge 10/% extra) who are fully aware of the Grants and vat saving’s (didnt even know i was able to get planning permission without paying) so at this moment in time its a costing exercise. If it does result in too much redtape in order to get grants we are prepared to go it alone and remortgage and pay for everything, it has got to a point in life where nan needs comfort/stability and warmth, without the understanding of dealing with a Social landlord who want the 3 bed house for a FAMILY yet wont make the relevant adaptations to properties she has veiwed (2) Also we have a ‘not very willing’ council who fail to pressure them, we dont need the hassle. I do feel its a right to expect funding to be accessed via ‘professionals’ and not office clerks or assumed persons with some knowledge and/or understanding of personal needs, that certainly whats lacking in my area. Being able bodied is something to be greatful for yet when a disability hinders a normal qaulity of life i dont see the authorities jumping through hoops…‘HINDERANCE’ springs to mind

Regards

paulc

6

Hi All

Well, its been a few months now and im no further to getting nan home than i was in March, I cant get a mortgage and i went down the DFG route but saldy i am not elligable for one of the most pathetic reasons ive heard in a long life of community activism, so bad i went on the local radio and they were intrigued so much they want me to keep them updated because the council DIDNT want to respond

Here’s what has transpired

Nans OT supports us in bringing nan home, she doe’s her assesments and assess’s my home, she writes to the ‘home improvements team’ who state Council policy is that nan needs to be living in my property and on electoral role, therefor will not send out a DFG application and flatly refuse to visit and/or discus its policy, now the odd bit, if i was a Social Landlord who wanted to adapt a property (35 anywere lane) on behalf of a disabled resident (lives in 12 twaddle rd) they can apply?.. this after the resident signs the new tenancy agreement, even they would need an EMPTY property to do Larger adaptations

We would have to leave our property in order for such works to be carried out so why move her in before???

I know the Direct gov site clearly states

Who can get a Disabled Facilities Grant

You can claim if you, or someone living in your property, is disabled and:

  • you, or the person on whose behalf you are applying, are either the owner or tenant (including licensees) of the property
  • you can certify that you, or the person on whose behalf you are applying, intend to occupy the property as your/their only or main residence throughout the grant period - currently five years

I try to contact the officer who made this decision and came up against a very abrupt lady who ‘put the phone down on me’ when i questioned why she wont send out the forms…i find this very disturbing its discrimination and its means only 1 of 2 things can happen

  1. The Council changes its policy and allows us the grant £25k circa

  2. We put nan in care £27k yr circa

So my saga carry’s on,

7

Phew indeed! What a lot going on and it takes the strength and stamina of a giant to keep going, no matter how many pitfalls you find yourself up against.

Now here`s an idea that MIGHT get you and nan somewhere.

Some years ago, my ma in law moved in with us. We had 2 happy years and then she and I had problems, which I won`t bore you with, but hubby took her to the council housing dept and briefly told them the problem. The reply was…

Oh right. Well here,,,,,,,,,,take these keys to a flat and see if youd like it`. Gobsmacking or what? She loved it and moved in straight away.

But after 7 years on her own, her mind started to play tricks on her. She was diagnosed with paranoia. It was sad to see her in dire straits.She was a danger to herself. We contacted a social worker, who agreed it was time for her to go into a nursing home. Phonecalls happened, but not much else.

In frustration I discovered a marvelous woman called Community Matron. I rang her, she came to see me the same day. She saw my hubby had me to look after and his mum was making so many demands on his time…24/7! Poor lad was beside himself with worry.

So what happened? Community Matron (Wonder Woman) flew into action. Ma in law was installed in a lovely care home within a week. I was also helped with some other issues by this miracle in human form.

So why not ring your GP surgery and ask to speak to the Community Matron? I believe all GP surgeries have one of these little marvels, but they are not well known.

i wish you all good luck.

luv Pollx

8

Paul,

l remember your earlier post - and l am horrified to see that you are still in the same predicament. l do hope Poll’s advice will be something you have not already tried. All l can add is - have you got a good local councillor who will listen and understand the situation. Keep banging on their doors - and revisit the local radio station - let them get involved. Have you asked any of the MS societies for help and advice - local Round Table - Lions - Age UK. Could you just move Nan in with you - then get the OT’s out to see how you are struggling.

l know of someone who husband was disabled with emphasymia - The local OT arranged for them to have an extension on the side of their [own] house - Ground floor bedroom/wetroom/ level access from house and double doors into the garden. Also a type of ‘baby alarm’ so she could hear him if he needed her help. Sadly, he died not long after all these adaptions were finished.

So when his widow decided to sell the house to move closer to her daughter - it had the added value of a ‘granny flat’.

How is it that some people manage to get lots of help - when others are struggling.

l believe any building work for a disabled person is vat free.

F.

9

Hi Poll Camp

thx for the warms words it nice when there are people who DO understand the pitfalls, anyways Poll in regards the local Council i really dont want nan to go in a home and just bringing her here is stupid because we cant accomodate nans needs ie bedroom/washing door widths cooking etc. The Council dont own any flats/houses anymore its all Social housing now and sorry 'they dont give a damn about the persons needs just getting rent on time in time…Community Matron has been gr8 alas the words ‘falling on deaf ears’ keep coming to mind when it comes to the council/housing association/social services working together for the individual. nans like a a matchstick to these professionals it feels. i aint overly happy but i am one stubborn person who will do as what i feel is required to maximise the problems to the public. i dont see Age UK getting involved cos they have no offices and support mechanisms in my area…The MS society is there but again they have listened but not followed up my concerns…

Camp regarding the costs if i could get it into the council mindset they can write into any agreement 100% return of funding not for the stipulated 5yrs, but 100yrs in my mind, we bought this home and will never sell it, nans deserves to live in a decent environment and not to cost the system and taxpayers thousands over the yrs if there is a cheaper alternative, this is they just dont give a cahoot…

paul

10

Paul, Look on Polls thread about ‘off on me jollies’ - l have written about the caravan my daughter has just bought - l wondered if you had space for one - could tie you over until you get the help you need. We had a friend come to stay for about 3months- he had been involved in a accident whilst on holiday in Thailand. Smashed his pelvis and hip. He stayed with us because l have a stair-lift and wetroom - lf we had the caravan then he could have managed ok in it. Even have it parked outside his own backdoor.

Anyway - keep us all posted - l am sure someone on here will know the answer - each time you add to your post it will get bumped up to the top!!

Fingers crossed.

F.

11

Hi All,

just bumping this thread up so as to allow a number of Officials the chance to and digest my posts,

Were is the Northwest MS rep when you need her??? email no response, mobile no response, what’s the point having the details on here if they dont respond, its now 12 wks

paul

12

Oh blummin ummer! It seems you are no further forward with all this.

You`ve tried all the advice I have given and not got anywhere.

The caravan idea of Campion`s is so kind. But I fear your nan would be a little frozen icicle in this weather, eh?

You`ll need to keep banging on doors.

luv Pollx

13

Hi Paul - I don’t think the MSS management/reps read these forums.

Most of the posters on here and the mods as well are people with MS and a fair few aren’t even MSS members.

Maybe phoning the helpline would be best? That’s what I’d do.

I hope you manage to get some help soon.

best wishes,

K

14

Hi poll

Caravan was a sweet offer that i have concidered regarding me n the missus and let nan have our room, but she would only be confined to upstairs cos we have no spare room down stairs and i couldnt (without a crane) get it in back garden, it did make me n nan laugh/smile and giggle when we first read it. you dont meet many

K i was thinking that MSS reps were members but you have opened my eye’s. i will beat drums and continue to challenge the policy, i have now registered an official complaint and now await there response b4 i go back on the radio who are keen to follow this story.

c u soon.

have nice wkend everyone.

paulc

15

Hi All

Ok, This is were i am upto, I finally managed to get a response from the councils Home improvements officer who refused to allow me the opportunity to APPLY for a DFG. This was only after i made a formal complaint. What puzzled me was i asked him ’ what document/policy was he useing in preventing me an application’ he then states the ‘Housing and construction Act’. though in his letter he simply states**‘The fact of the matter is that the local authority shall not entertain an application for DFG unless the applicant is a tenant of the property concerned’** This began to puzzle me because after 12 months of study i had not come across such a document. taking this into account i read it and couldnt find anything, then it dawned on me i have been making the simplist of mistakes, NAN is not the applicant I AM, so on this note i ring the department and the officer i need aint there. I gets a call not 1hr l8er (thursday gone) and lo and behold he says ’ i was going to ring you this afternoon, ive spoke with your OT and social services and i will be out on tuesday to view your home and then your nans home, from this i hope we can put a plan together and see were we go to help. im not taking this as a yes or no, im happy this guy is coming to look and see himself its the right option and most cost effective. I do see this as another hurdle jumped for the guy on the street. if i was a more balanced/professional and acceptable person i feel the local authority would not ‘brush me off’ assuming ‘dont worry he will go away if you baffle him’ attitude. i know people are regulary intimidated by those in authority and accept it as a norm. one thing ive learnt is play them at there own game, try to take a balanced approach, They assume its not illegal until you prove its legal, therein lies the problem you have to prove its legal before its illegal (food for thought that one lol)

Update after tuesday fingers xxx

have gd wk all

Paulc

16

hi all,

Well im now having to remortgage to allow for the extention, the council use a system called ‘the ricks/rix scale’ this takes into account ‘profit’ so now i need to raise an additional £15k taking the total cost to £45k, i feel robbed and this is a legal way to prevent me accessing this grant on the assumption i wont raise the cash, haha they gona get stumped, i h8 the fact its more debt but hey, she wont go in a home and cost them £30k a yr. anyway fingers crossed remortgage go’s through.

write soon, keep well

bumped up for a freind to read

paulc

17

Hi all

Well its been a trying time for my family both in endurings Nans discomforts and putting up with differing costs as too what it entails in getting this DFG grant. As of today we now have the desired £15k the Council wants us to have and the ball is now rolling to get the extension built. i have found the disability organisations completely unco-operative and completely ‘at a loss’ as too who/what or were we go to get the correct support/advise in regards the outline costs of this and i wonder why such forums like this are in place if they (Ms Society/Carers uk) dont actually get involved or guide the members. For other sufferers to support members it’s a gr8 format but sadly the system is pathetically managed. My Family have incurred a further debt of £45k in remortgaging and our monthly income has been severly cut to get this mortgage and if thats what it takes without these Organisations helping then i for one understand the impact it has on those in a less fortunate position to cope which is a disgrace.

I will continue to provide updates on this over the coming months and cannot wait to take Nan out the system to give her a better quality of life, what these organisations dont understand is we are now going to save the system £30k a yr, what have we got out of this = £30k debt now £75k

paulc

18

Hi Paul it would be a lot easier if Nan was already living with you, then OT would assess and the work would probably be done with no payment from yourself or Nan. It woulld be very unlikely that any work would be done untill Nan moves in with you. Sorry but it seems thats how they work.

19

Hi Sally

We have had the assesments and your correct in as much as the grant covers a maximum of £30k, which after having builders provide estimates it could/should cost no more than that. But if we assume the Government guidelines for getting the grant are correct, and i qoute…

Who can get a Disabled Facilities Grant

You can claim if you, or someone living in your property, is disabled and:

  • you, or the person on whose behalf you are applying, are either the owner or tenant (including licensees) of the property
  • you can certify that you, or the person on whose behalf you are applying, intend to occupy the property as your/their only or main residence throughout the grant period - currently five years/

The word INTEND completely refutes the assumption nan has to be resident at my property of which i can CERTIFY she will be resident as and when the works are complete.

Ive been accused of being pedantic and knitpicking but statuory regulations are very clear, its the local authority that is putting its own constraints of the application, thats wrong, i dont claim to be a law expert but i do know if this was case law then the wording would be picked upon by a solicitor and thats all ive done.

thanks for your contribution

paulc

20

Hi Sally

We have had the assesments and your correct in as much as the grant covers a maximum of £30k, which after having builders provide estimates it could/should cost no more than that. But if we assume the Government guidelines for getting the grant are correct, and i qoute…

Who can get a Disabled Facilities Grant

You can claim if you, or someone living in your property, is disabled and:

  • you, or the person on whose behalf you are applying, are either the owner or tenant (including licensees) of the property
  • you can certify that you, or the person on whose behalf you are applying, intend to occupy the property as your/their only or main residence throughout the grant period - currently five years/

The word INTEND completely refutes the assumption nan has to be resident at my property of which i can CERTIFY she will be resident as and when the works are complete.

Ive been accused of being pedantic and knitpicking but statuory regulations are very clear, its the local authority that is putting its own constraints of the application, thats wrong, i dont claim to be a law expert but i do know if this was case law then the wording would be picked upon by a solicitor and thats all ive done.

thanks for your contribution

paulc