Bfp update : Hi still here and going home Friday to... - PMRGCAuk

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Bfp update

Bfp1 profile image
Bfp1
14 Replies

Hi still here and going home Friday to be housebound. A real worry.

Seeking advice. How do I know which allowances I might be eligible for? I am 60 and have a blue badge. I am usually fun and full of life! Now depressed and apprehensive.

Apart from hospital transport - how can I pay privately to be carried in and out of home. Or nhs? Or charity? I need to be able to get out to practise walking and not go mad.

It’s block of 12 flats. Privately owned. Do you think I would be allowed a chair lift to the first floor?

What eligibility does being housebound have? Desperate again. Still can’t up from low chairs but easily solved.

Love to you all.

I am not moved from 40 pred to 35 daily. Chemo Monday again. Third of the 6.

With love and thanks xx

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Bfp1
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14 Replies

Just a quick reply, as it’s my Hospice Voluntary Day, are you in the U.K.?

The Red Cross are a useful resource

redcross.org.uk/get-help

Kind Regards

MrsN

Bfp1 profile image
Bfp1 in reply to

Thanks. Yes in north London. Package of

Care and support. X

SnazzyD profile image
SnazzyD

Glad to hear you’re getting home: it will be nice to have your own surroundings. I do understand your worries though. Please tell me you’re being discharged with some sort of support and/or assessment of your home and situation. Have you been in contact with Macmillan; they can be very helpful with life’s practicalities and know what you might be eligible for.

As for a chair lift, the first instance would be to approach the management committee or team for the flats to see if the rules would allow it.

Bfp1 profile image
Bfp1 in reply to SnazzyD

I will do that today all being well x

SheffieldJane profile image
SheffieldJane

Age UK have a useful, comprehensive, article about Care when you leave hospital. It talks about a comprehensive care plan upon preparing to leave. This would include any aids and adaptations you may need. It also tells you how to access this yourself via social services. I can’t make my iPad add the link. Just google Care when I leave hospital. I expect that your GP’s surgery should also be able to put you in touch with the right people. Ensure that you claim any benefits you are entitled too.

Let us know how you are getting on. You’ve had quite a challenging time of it haven’t you. 🌸

Bfp1 profile image
Bfp1

Yes! Thanks. I have reduced from 40 to 35 pred daily 2 days ago. I can already feel more pains under and through the arms. Will see how it goes. They have increased

My patches to 15 from 5. I pray for normal

Whatever that is now xxx. Awful

Indigestion even in my ears and head.

jinasc profile image
jinasc

Apply for Attendance Allowance. One is for 24 hours (the greater one) and the other is slightly less. Below is the link.

You can do it all online. gov.uk/attendance-allowance...

piglette profile image
piglette in reply to jinasc

I think you have got to be State Pension age to apply for Attendance Allowance.

Bfp1 profile image
Bfp1 in reply to piglette

I think so too. I am a young 60! Before steroid I looked even younger than that. !

Rose54 profile image
Rose54 in reply to Bfp1

That's correct you would need to apply for Personal Independent Allowance

Do you get Universal Credit ?

piglette profile image
piglette in reply to Bfp1

The steroids do help iron out the wrinkles though!

Blearyeyed profile image
Blearyeyed

Do you have a friend or family member whom is coming in to support you?

What care package have they given you so far , is it just to do with your medical needs?

Have you had a session with a person from Occupational Therapy , and been given one of the sessions they can do assessing your ability to cope at home in a room set up like a flat?

If you haven't,, and you are still in hospital , it would be a good idea to tell the Ward Staff / Doctor you see this morning about your worries and ask if it is possible for them to call through to the Occupational Therapy Department and have them come and assess you before you are discharged.

They should be able to give you some questionnaires and checks and may be give you some things to help support your ability to do things at home.

If you have no support at home , you can tell them or the hospital staff today and ask if you can be registered with Social Services for help at home.

Exercise , again it is worth asking the Doctor before discharge to refer you for physiotherapy to be assessed and do your initial physical therapy with them. The Doctor can also put you on the Exercise Referral Scheme today or you can apply via your GP which gives you access to different types and levels of classes with qualified instructors , where, you can get active with support , and , make some friends at your classes with similar health issues to you.

This scheme also allows you free , or highly subsidised access to your local pools and other classes.

Other exercise you may want to do you could ask a friend to join you , or look up local groups like U3A , Over 50's , Age UK , and other local groups to find group things to attend or volunteers to come out and walk with you. Even local schools , guides and scout groups can be contacted to ask to see if they have a Helper Scheme , in which they come to accompany you , do jobs etc. and get credit for their badges or Duke if Edinburgh Awards.

Depending on your illness and abilities you should be able to get Home Visits , and a daily visit from Home Help Visitor whom can help prepare you a daily meal and do some little jobs around the house , you may be able to get support with cleaning .

As you are in London , it's likely that they have a Patient Support Officer , either as part of the hospital or from a group of volunteers to do with Age Concern , Cancer or whichever illness is appropriate.

Ask the ward staff to check , these people often have lots of information on help you can apply for in your area and what payments you can apply for. They will help you with the forms as well. They might be able to begin the paperwork before you leave hospital and could sign you up for appointments and act as your liaison with different agencies to make the job of getting help easier for you.

Occupational support via,Occupational Therapy come out to your house to do Home Assessments as well and will then send you mobility aids for your kitchen , bathroom and general living needs. You can get help with stair lifts too.

In terms of transport , your area should have some sort of mobility transport service that you can sign up to .

You book your trips by phone and they come to collect ,and return, you home at a specific time in a mobility assist mini bus .

These services are often free, or come at a charge similar to a bus fare , if you have difficulty getting to and from your flat the driver will also come to your door to help you , if you have bags they will carry them.

Again Occupational Therapy , a Social service Officer or Patient Liaison should be able to help with this information too.

There are Volunteer groups not specific to a particular charity that also work out of the hospital to accompany you to appointments and tests if you don't have that support .

And many local areas now have a volunteer lift service for people with transport difficulties.

You can start having your shopping done online and delivered or there are also Shopping services available in some areas.

Contacting Age Concern , Age UK , Macmillan , Citizens Advice or looking up smaller individual support groups on the internet that you can use will also be helpful.

There's lots out there to help you , so don't worry , but if you feel up to it today ask to see someone from Occupational Therapy and Patient Support today before you are discharged and you can get the ball rolling.

You GP can also refer you for help in the future too.

Take care , it's alot to think about but there is help for you so try not to be too apprehensive about the future , it's not as depressing as you first think.

Rose54 profile image
Rose54

Hi

The hospital will have a Social Worker who should help

Also the physio should put any aids in place before you go home

If this has not been done ask for it before going home

Contact Age UK thay work closely with Social Services and can help with benefit claims

wiserlady profile image
wiserlady

Hi. I am housebound too, of course our situations are very different but we are almost the same age. One of the things I am trying to arrange is to have some telephone friends so that we can ring each other for a good friendly chat when we are not busy with visitors and other stuff. I find that the practical things like getting shopping etc need to be solved, but you also need to cover being stuck indoors or alone so much too, otherwise its a very long boring lonely day.

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