Worried about my dad - what help is he entitled to.

[stripeyknickersspottysocks]

My dad is only 65 and until last year was very fit and healthy. He was suddenly struck down by a rare form of vasculitis and has struggled with his health since. There is no cure for this and although he is on meds to try and control it he has flare ups which require hospitalisation and also is generally up and down.

He lives by himself in a house which he recently bought. I did try to convince him a bungalow would be better buthe was't having it.

His main symptoms are extreme tiredness (but also insommnia) , muscle weakness in his legs and deafness.

He lives in a town and only 3 weeks ago he could walk to the shops in 5 minutes. Now he's struggling to get there and having to stop for rests on benches on the way. He does have a zimmer on wheels type thing to help. He says that even doing the washing up is a struggle as he can't stand for more than a couple of minutes.

His consultant and GP seem fairly blase about all these symptoms and haven't been very helpful. Basicly told him that this is what his life will be like now and to get used to it. He isn't claiming anything extra or even registerd disabled. He doesn't think he would be bad enough to be registered disabled so hasn't asked his Dr.

Is it worth getting social services involved for advice in such a situation?

He lives about 8 miles from me and I have said I can go over once a week and do housework. He manages with shopping by gettin Tesco to deliver.

I think he can probably get attendance allowance. He might be able to get meals on wheels or go to some sort of day centre. I tinkhe needs to go back to his GP, perhaps with you there too.

Thanks fo that, I've looked up attendance allowance and the DirectGov website says its for people who need help getting dressed or with washing. Well he's not that bad. I think he'd hate a day centre as most other people would be quite a bit older than him.

Will talk to him about going back to his GP for advice. Thanks.

Our country council has a benefits advice agency for over 60's is it worth trying yours? Also age concern gives advice.

He may be entitled to disability living allowance, even if not to an attendance allowance. There are also all sorts of things that may make life easier. I would ask his GP for a referral to the community occupational therapists - they will visit his home to assess what aids he could have to help him. A physio assessment might also help - the GP can request.

Your GP won't be much help on benefits though - we have no training about them and they are incredibly complex even for experts. You'd be better off contacting Social Services to start with (ask for the adult helpdesk) then Citizens Advice if SS don't help. Age (used to be Help the Aged) are really helpful too - www.ageuk.org.uk/. Even though your dad's not very old, a lot of his problems are similar to those of the elderly so Age would be a good source of advice.

Good luck

Spot on jybay - You said everything I was about to post.

The local council may also run a scheme for home help. They can do an assessment to see if your dad can have better facilities fitted into his house, walk in bath, hand rails etc.

You should try and claim DLA, I think he'll get the higher rate of mobility and talk to SS as Jybay said.

Your dad needs a point of contact within the system/community to help with all he is entiltled to. That way he can keep his independance but have equipment in the house to make sure he doesn't struggle as much.

Good luck x

You might find that your local CVS - Community and Voluntary Service has some sort of signposting service to help your Dad find out about and access service. As well as help from statutory services, there may also be help from local voluntary agencies.

Don't be put off applying for Attendance Allowance - from what you've said, I think he might be eligible. Don't try filling in the forms yourself though - go to an advice ccentre, get the Occupational Therapists to aadvise, or see whether the Pension Service hhave a local service close to you who could ddo home visits.

HTH

I think the advice you've had is great. One thing that may not have occurred to you is the SSAFA. I have tucked the info about them away in my mind because my dad did National Service and is therefore apparently eligible for their help. Your dad was probably too young for NS but just in case he has a forces connection or ever served, they also may be able to help in some way. HTH.

One other thought is have you tried Googling the name of his vasculitic condition? Thanks to the internet, even quite rare conditions now often have webistes & support groups. Have just found this one for a start www.arthritisresearchuk.org/arthritis_information/arthritis_types__symptoms/vasculitis.aspx. One word of warning though - when you Google a medical condition, you tend to get a lot of worst-case scenarios so don't assume that everything you read will apply to your dad.

For general advice on his condition, what to expect and what might help, try www.patient.co.uk and www.cks.nhs.uk/information_for_patients - both these are NHS-run sites so the information on them is trustworthy.

maktaitai - that's really interesting about SSAFA - had never thought that my patients who did National Service might be entitled to help through them. Thanks

Sorry to hear your dad is so unwell.

Just out of interest- is it Wegeners disease? Your dads symptoms seem very similar to my mum who suffers from this rare form of vasculitis. It changed her very quickly from a very active 62 year old swimming 5 miles a week to a frail old lady.

She has been in and out of hospital for the last three years but once they got her meds sorted (which took a very long time and it's still not perfect) she does have some prolonged periods of having a fairly good quality of life.

There are support groups for this and other forms of vasculitis perhaps you might like to google these (but not the actual condition)- as with many conditions- worse case scenario seems to be the order of the day!

Take care

Sorry to hear about your father.

His local Age Concern (Age UK) will have some information and advice about what is available locally or will at least be able to signpost you (shopping help, benefits entitlement, computer lessons so he can shop online, handyperson for changing lightbulbs, odd jobs, exercise classes, lunch clubs etc).

I chair an Age Concern in London and we help anyone over 55 - they vary a lot, so he should check out what is around locally without preconceptions.

He is entitled to an assessment of his needs from social services, and as a carer, even if you love quite distant from him, you are entitled to an assessment of your needs.

Getting a small amount of help going in would at least mean there is someone checking on him if there is an exacerbation, or if he falls.

Sorry, should also have mentioned that Counsel and Care are a good resource as well.

Can I suggest you try the community occupational health department? Not as it sounds concerned with employment but with the provision of aids and equipment in the home.
I'm not sure whether you need referral from GP or social services. My father was referred when he was discharged from hospital and they were very quick in making a home visit and fitting grab rails, bath aids etc.

inthesticks, you mean community occupational therapy dept - GP refers - see above.