What a shocking past week! I've had COPD ( emphysema ) for several years but over the course of the last few weeks I've experienced a rapid decline in my breathing to the degree I could only walk a few metres before being totally out of breath.
On Wednesday I attended a routine appointment at Sevenoaks Hospital with my respiratory consultant and after a short while found myself in the back of an ambulance and being taken to Tunbridge Wells Hospital A and E. After a couple of days and nights in The Acute Medical Unit and receiving around the clock care including constant blood tests, having my oxygen levels constantly checked And after having an X-Ray and CT scan the conclusion is I have severe emphysema. My SATs without oxygen fell below 70%.
After having an oxygen concentrator installed at home along with several oxygen cylinders to allow me some mobility outside of the flat I am now on oxygen 24/7. Annoyingly I will have to adjust to a few lifestyle changes and it's all a lot to take in and process at the moment when previously I have been so physically active.
I already receive PIP standard care for other unrelated health issues and wondered if I should let DWP know of changes in my condition. Currently I am unable to exert myself at all and both my ability to care for myself and my mobility are effected. As someone who lives alone I am unsure of other help that may be available to me.
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Nickcv
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Yes, as you now need more help I would say that it would be a good idea to tell them. I don't know what level of mobility you are on with PIP but it may be a good ida to get that reassessed as with the highest level you may be eligible for a motorbility car.
I had the same, where I scored low on the mobility side. However things have changed and I’ve re-applied.
I applied for a blue badge recently and have received it after a review of my medical history and a physio appointment. I’m hoping that will hit home a bit with the mobility side of things on my reassessment. The fact a physio actually saw me (on a “good” day too!) and it wasn’t simply over the phone like PIP.
Hi Nick, I would say definitely yes. Your health has become worse and you should be entitled to more help, both financial and physical. I would call PIP and explain what has been going on, they will give you the advice you need. Also, I would speak to your doctor about your problems and being referred to adult social services, they will come and assess your needs and again advise accordingly.
I can be quite definite about this having spent 14 weeks in Pembury hospital this time last year. I would also like to ask if you have a consultant in whom you trust? I ask this purely because I suffered a catalogue of mistakes while I was there and I firmly believe that if it wasn't for my daughter, I may not have come out of the situation. I am only now recovering from my stay there, and I would very much like for you to be under good care. You probably are, but bear in mind who your consultant is and weather you trust him/her. Keep in touch xx
Sorry, having reread that bit, it turned into a bit of a rant! But really I just want you to be under the care of a good consultant. xx
I would notify them of the changes. Whether it affects your payment remains to be seen. If you are pension age the mobility rate won't be increased. This is their ruling unfortunately. You may be entitled to a higher rate for personal care though.
As for the oxygen, I am on it 24/7 and got used to it quite quickly. The cylinders for mobility are easy to adapt to, you just need to be aware of how long they will last if you are out of the house.
It sounds as if your specialist has given you a thorough check up and given you the treatment you needed. If you are still under the specialist you will get regular checks which will give you some reassurance as time goes on. Best wishes.
Yes report a change in circumstance. Reading your post sounds like you are not that mobile and you could qualify for the mobility component and if you need care 24/7 I think your care would rise.
Hello, I'm on oxygen 24/7 if your sats drop to under 94 whilst attempting to touch your toes ( pip assessment) then you are immediately awarded 12 points for the mobility part. I used mine for a car, but you can have the money instead. I've been on pip 4 years now.
Remember that the physical mobility section of PIP is to STAND and walk, so a smooth action. If you struggle to stand eg to organise a stick or crutches or oxygen line whilst trying to stand, you should qualify. I had had a blue badge for 6 years when I first applied and still got turned down. In the end after a mandatory reconsideration and then appealing, just before the Tribunal date, they offered the enhanced rate.
Good luck in getting the extra benefits you are now entitled to. As Spacecat says the CAB can be very helpful if you need help dealing with the paperwork.
Hi Nickcv, as your health has deterriorated and you have been in hospital I would definately go for review of pip. Don't wait as the hospital admission also counts towards getting higher rates. I get top rate mobility but its a bit different I have COPD moderate with other conditions like sight impairment, arthritis etc so mine is for multifactual impairment of mobility including a fall record. . But even if refused it all goes on your record for future assessments.
hi Nick , sorry to hear that , yes I would contact PIP, as your circumstances have changed, remember it’s not the illness , it’s what you do day to day they look at , I would think you’re higher rate ? Going by my own experience.
Regarding living alone , are you linked in to Adult Social Services, they can offer you help and link you into local help, I hope this directs you to the correct help you need.
yes go do toll them i was On Low rate pip with a different issue then after 2 five stays in hospital I was diagnosed with pulmonary hypertension stage 4 now on oxygen 24/7 now on PiP high rate hope this helps and god bless you
Hi Nickcv. How awful this experience has been for you. I think you must be feeling constantly exhausted every time you exert yourself and not feeling much like applying for upper levels of PIP. However, there are some excellent posts in this group and you may , when up to it , search for PIP postings in the search bar at the top. I do hope you will apply and receive the help you need. I would love to hear how you are doing and hope you will keep posting. If you decide to apply remember to answer the questions in relation to your worst days. Wishing you all the best xxx💓
I was too old for PIP but as soon as I was put on 24/7 oxygen I was awarded attendance allowance and a blue badge. You should also receive an electricity rebate via your oxygen supplier to cover the cost of the machines in your home.
It's just a rather rapid deterioration of my emphysema that has reached the severe stage. I knew I was getting worse but didn't expect it to decline so rapidly. I attended hospital for a routine appointment and had to rest against the wall in the outpatients entrance and a nurse fetched a wheelchair and stayed with me until I saw my consultant who had me in the back of an ambulance within 20 minutes.
The decision to put me on oxygen 24/7 is a life long arrangement and as far as I am aware there is little chance of improvement other than whatever I might achieve via pulmonary rehab. The oxygen protects my organs but cannot eradicate my continuing breathlessness.
Yes do reapply you could get the full mobility part ...which would also allow for a disabled badge ect. If need help with forms you can get help from citizens advice which I found helpful.
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