helping mum get more assistance in the home - Parkinsons Disease

[Ringsender2]

hi,

my mum (78) has had Parkinson's Disease for a long time, lives on her own, and is finding it increasingly hard to do things for herself like get out of bed, get dressed, cook, etc.

She is in receipt of DLA (not sure what level). I would like to help her get an increased level of help (actual on the ground caring, plus financial to help pay for some of it).

She thinks that she needs to apply for increased DLA, and also contact Social Services. I have no idea if this is the correct or best route - if anyone can help point us in the right direction, that would be amazing. (The gov DLA is not particularly enlightening, and I wouldn't know where to start with SS.)

many thanks for any help people can give

Age concern has an advice helpline, if you scroll down this link the number is there.
www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/benefits-calculator/

I think, based on PIL situation, she could apply for attendance allowance
www.gov.uk/attendance-allowance

Some info on here
www.nhs.uk/conditions/social-care-and-support-guide/

She can ask her local adult social services to carry out a care needs assessment, her Parkinsons nurse, community matron or therapists can help you arrange this if you have any problems. They will visit her at home to assess what further help she needs, a therapist can assess her walking and ability to wash, cook, clean etc. And if they feel she needs more help can arrange this, they can install equipment and make mall adaptations to her house to a certain level. There are also Grant's available for things like a accessible bathroom and loo. Her g.p might also like to see her to review her general health and medication. The parkinsons disease website will offer you lots of advice.

HI @GrrRightBackAtYou and @DogsSausages - that's great, many thanks. I have had a quick look at the Parkinsons UK website, but haven't looked at the Age Concern website or NHS social care info. Good to know about the Parkinson's nurse, too.

If anyone else has any other nuggets of wisdom, that would be great.

One issue is that because she can walk some distance, she thinks she doesn't qualify for a Blue Parking Badge. However, she finds it really hard to get in and out of a car (we have to pull her out, so need to have enough space). Plus, she has her limits to her energy for walking, so if we have to park miles away then she's run out of energy by the time she gets to the intended location (or sometimes before). Does anyone have experience of Blue Parking Badges, and the best way to get her point across that although she can walk, she would really benefit from one?

She will need to have a mobility assessment ro get a blue badge which is something the therapist, doctor or nurse can do for her plus a photo.

Blue badges vary by local authority. Have a look at the county council website for your local info. Dm did not need an assessment.

Carers uk are another useful resource.

She needs an assessment from social services but be aware that because of the pressure on social care, you’ll have to fight like hell to get anything. This should help

www.ageuk.org.uk/information-advice/care/arranging-care/care-needs-assessment/

My mum has Parkinson’s and can still walk a little bit. The minute she got Attendance Allowance I applied for a blue badge for her and she got it no problem.
Step one is apply for Attendance Allowance and then a blue badge.
Step two is contact your local council adult social care for a care assessment.
Step three is a council financial assessment for care payments.
In the past few months I arranged for mum to get care at home. To do this I contacted adult social care. A woman came out, did an assessment with her and recommended care she should receive. This was put in place a week later. The woman doing the assessment suggested that assisted living would benefit mum and just two weeks ago she moved into sheltered housing with carers on site. She loves it there and now has some independence back and is making friends.
To finance her care the local council did a financial assessment of the money she has and the council pay for some of the care and mum pays for a little bit of it.

FYI mum had no mobility assessment for the blue badge because she has Parkinson’s and there was no fight to get her support, it has all been provided easily and as soon as it was needed. I can’t complain about our local council, they have been amazing these past few months.

She needs to claim attendance allowance at higher rate.

She needs a full assessment of needs by local authority. Her Parkinsons nurse can also ensure she and her her house are assessed by an OT and adaptation put in, where necessary. There are grants to maintain independent living.

She can apply for a Blue Badge via local authority - the rules vary by council and she may need her GP to sign or send a form. I’m sure she’ll get one.

My mum didn't need an assessment for a blue badger, just proof of her Attendance Allowance and a quick form from the GP.

As for social services - you will not have to 'fight' to get help, it's just some have longer waits that others. Where I am the issue is not getting an assessment it's finding the care to meet the need as there is a real shortage at the moment due to COVID and Brexit etc.

What county are you in?

Don't apply for Attendance allowance!! She is already getting PIP/ DLA. They are equivalent disability benefits but she can keep DL A (now PIP) if was in receipt before she aged past 60. You do not want to do a new claim.

She can request an assessment of needs from adult (social) services. (Or you can refer her with her consent) once assessed, social worker will advise what support options are and will likely also suggest if she may need to consider applying for higher level . Voluntary agencies can also advise/ help on requests to review disability benefit levels

Hi all, thanks so much. All brilliant info. Please keep it coming.

She's on DLA and a pre-1947 baby, so she'll stay on that rather than AA or PIP.

She's in West Lancs, if anyone has experience in that area.

Do you think it's best to try to tie-in with the Parkinson's UK people at this stage, to try to get their help, or to go it alone using the steps above?

If it were me I would do it in this way,
Go through her paperwork and see if there are any letters from social services, nurses or therapists who assessed her before for DLA, ring them and ask for another care needs assessment or you can do this online or ring adult social services if you cant find anything
Ring her gp and ask if she has been allocated a a Parkinsins nurse and ask if she can visit at home or in the surgery for a general check up and medication review. If there is no PD nurse they may suggest a district nurse or gp.

Contact PD UK to see what local support is available
Apply for increased DLA and a blue badge
Consider buying easy to get on and off clothes
Consider small equipment that might help like cutlery, crockery, bath aids. I buy from The Complete Care Shop, if you buy anything make sure you fill out the VAT exemption section
Look at setting up ready meal deliveries that she can put in the microwave and general online deliveries. If her swallowing is affected she may benefit from seeing a speech therapist and dietician.
Think about a Careline and falls alarm at home, she can have a keysafe put it in case anyone needs to gain access if she needs help
Talk to her about setting up direct debits for her Bill's and granting you power of attorney for health and finances
You will need her agreement to do all these things good luck, it can be a bit of an uphill struggle but you will get there

Re Blue Badge, I applied 3 weeks ago to Lancashire County Council ( it may the the same council for your mum) on behalf of my father in law. He can walk okay on his good days, but on bad days really struggles. I completed form on line - it is relatively straightforward and you can save it & return to it if you need to find information out. I just put all his meds in, described his illnesses etc. I got a phone call 10 days later asking for clarification of a couple of things, and got his application approved immediately. Had to pay a charge of £10 over the phone and his badge arrived today.

I have to say I was very impressed with the service. Hopefully we won't have to use it much but at least we have it when we need it. I'd definitely apply if I were you. Good luck.

Here's the website you want for Lancashire CC

www.lancashire.gov.uk/health-and-social-care/adult-social-care/

Have a look around it

Thanks all. So much - really appreciate it