Can anyone suggest case law/tactics for CF please? Client's son (the claimant)is 19. He is very reluctant to take his meds, do his physio or take care of himself in relation to the illness; she has to monitor him to do it all. He does have a job so is not with her all the time. He had lower rate both comp's for 10 or so yrs until turned down on latest renewal. She is already sending in a diary of his care and mob. needs and asking for a report from his consultant. The CF society has already sent a report.

I have a similar case about to be listed for hearing, having been postponed. Given our proximity, I'm even wondering if it might be the same client... confidentiality will therefore be adhered to here. If it is not the same person,I will let you know how I get on. Currently gathering medical evidence with the help of a CF social worker based in the hospital.

Hi,
I am the Specialist cf social worker based at the Adult CF Unit, in Sheffield and I provide a welfare rights service for our patients in Sheffield, with representation at Appeals.
I hope I can be of assistance.
The fact that the client is employed should be irrelevant. ...if we can establish CARE needs and/or MOBILITY needs for part or throughout several portions of a day on a regular basis, then he should fulfil the criteria.

The cf Trust do publish handouts/brochures on all aspects of CF and there is one on HOW TO APPEAL,, there are also many references on rightsnet on how to appeal against a DLA DECISION.
The idea of keeping a diary of daily needs is a good one.

To have received the lower rate award, your client with CF must have had a minimum of about 1 hour's care imput in a day or failed the 'cooking test'.
The majority of patients with CF need to perform physiotherapy usually a minimum of twice per day , sometimes more , and this increases with exacerbations of infection to sometimes 4x per day.
If your client is advised to perform physiotherapy twice per day with assistance, ie postural drainage, from his mother or any other person, we usually state 2x30 minute sessions with time for dressing/undressing and preparation, also patient may need to nebulise antibiotics immediately after physiotherapy. In addition to this CF patients need to take several drugs in order to maintain their health plus dietary supplements in order to absorp the food they eat. A person with CF needs to eat 150 % of normal intake.itself a considerable commitment if weight is to be maintained- the bowel, pancreas and liver are also affected in this condition, and some patients also develop diabetes.
CF is is a genetically inherited, incurable, degenerative lifetime disorder. It is impossible for the disease to go away or improve. Lung disease is progressive and always worsening.

Many patients and particularly young adults or teenagers require ACTIVE encouragement with medication, reminding to take enzymes and even prompting to eat at several intervals throughout the day , this could be as many 8 times per day as many cf patients are advised to regularly snack.
You do not state whether the clients walking ability is impaired . some cf patients cannot walk very far without stopping or have coughing fits and need to regularly rest or cannot walk long distances. It is possible that your client may be transported to their workplace or that they can drive or that they are taken and collected at the bus or train stop?
Additionally, his work colleagues may have a regime at work that prompt or remind him to take medications or indeed assist with the physiotherapy as anyone can give the care at any time.
Are their any special needs to consider ?Is the young man safe to travel alone , does he get anxiety or panic attracks ?ALL these issues need to be addressed.
There may be a specialist Nurse or Social worker attached to the Unit he attends in your region...ASK! Specialist Nurse or CF Social Worker can submit written evidence in support of your client,as well as the Consultant.

Read the Day and Night Conditions and see how your client might fit into the criteria, Also see if they need help dressing , at night , propped up etc, climbing stairs...carrying heavy weights, eg shopping , cleaning rewquirements and so on.

It is not unusual that patients are being reviewed and being awarded zero awards. In my experience , especially over the last 18 months , I have had many cf patients particulary young adults 16-20 years , having been in receipt of higher rate awards being dropped to zero awards... but do not despait 100% om my appeals have been successful in the 5 years I have been at the Unit. So Good Luck with your case and if you need any general info on CF, CONTACT ME VIA THE BOARD . and I will do my best to assist you.


Cheers.

Dorothy Langman

The cystic fibrosis trust website is available @ http://www.cftrust.org.uk/index.jsp

The publications highlighted in Dorothy's posting are available @

http://www.cftrust.org.uk/scope/page/view.go?pageid=176&layout=cftrust

Thank you all. I'm waiting to hear from client, whose appeal should have been heard by now unless postponed. She has used CF help websites already.

I found the cf social worker at the hospital really helpful. She has helped me to obtain a written statement from the client's consultant which is specific to the qualifying conditions for DLA. I am awaiting a diary from the client's mother of his care needs over the course of a week,and I intend to proceed with writing a submission after that.

On the basis of the consultant's report, I'm quietly confident of a positive result.

Will keep you posted.

Thank you. That's more or less what I advised my client to do and it is helpful if you can rep.too. Hope you win.

The hearing took place today. Client was eloquent and credible,all arguments seemed to stand up to scrutiny, and I was able to rely on a lengthy consultant's report, garnered for me by a very helpful CF social worker.

We will get the decision by post,and I'm cautiously optimistic.I'm on leave for the next week, but I'll let you know the result.

It turns out that we didn't win, which comes as something of a surprise to me. As I said in my previous post, I was optimistic after the hearing, and would not have been surprised by an award of mid care.

The client , against my advice, does not wish to ask for the statement of facts, or to pursue this claim any further. Pity, I can't help thinking that it must be a mistake.

Yes, a pity, and a pity client does not want to get the full decision etc.

Hi Neil,
Just picked up your post...disappointed to hear your appeal result !
It hardly seems credible that any person with CF does at not least qualify for a lower rate award, particularly after already being in receipt of a previous award. CF is a progresssive, deteriorating disease...someone should let the Appeal Panel know !
Does your client have any physiotherapy input, nebulise, etc?
It is a great pity they have 'given up' at this stage...If you let me have the name of their social worker or specialist nurse, I could contact their Unit directly to see if I could offer any further assistance.
There is nothing to stop them making a fresh application (with asisstance).
I do understand their disappointment and frustration at this decision.

Either contact me via the board or email me on orothy.Langman@sth.nhs.uk">Dorothy.Langman@sth.nhs.uk and I will see if I can help.


Cheers.

Dorothy.