Ds1500

[MartinB]

At a recent MND outpatient clinic our specialist nurse casually mentioned that she will request our GP to raise a DS1500. When asked about it she replied that ‘it something to get out of the way’. When we got home and looked it up on Google we were shocked especially with the ‘unlikely to live beyond 6 months’. Surely this can’t be right? Caroline has real issues with her arms, hands and fingers but no significant problems with breathing.

[Mary C]

Hi Martin ,I too had DS1500 given me on diagnosis 13 months ago at my request.
I was then able to forward it with Benefit application and secured higher rate of Personal Independence Payment.
Because MND has an unpredictable and progressive pattern my neurologist was happy to give me DS1500.
It would have been better if you and your wife had been given an explanation about it so as not to worry you both.
I hope it’s useful if your week wishes to apply for any benefits.
Best wishes
Mary

[Mary C]

Typo error meant wife not week.
Mary

[denise]

Yes get the form. Doesn't mean you are expected to be gone in 6 months. They revisit it every 3 years. You need it for everything else. 🤔

[denise]

I've just got Stephens will be leaving it for Thursday when the mnd nurse calls. We only fill in a few pages. So if you want to wait I will let you know.

[SallyAnnB]

MartinB I think this is typical of the box ticking mentality of some of the people supposed to be caring for us. I was diagnosed at the same time as your wife, having started with hand problems eighteen months earlier. At six months on the dot after my diagnosis I was persuaded to have a RIG which I don’t need and has given me nothing but trouble ever since. At nine months the respiratory nurse suddenly raised the issue of NIV and gave me an oxymeter to wear in bed. I asked for my test results so that I could be fully informed before she pays me a visit next month but all I have received is a letter saying vaguely ‘some dips in oxygen levels’. And to cap it all, my next (online) appointment, at the one year point, is with the end of life consultant. They haven’t actually told me that or prepared me in any way for what he is going to discuss - I only have a name. I looked him up on the hospital website and was shocked that they were going to spring this on us out of the blue. I haven’t dared tell my husband as I feel it will distress him. I feel I am being timetabled towards my doom with no regard for my actual state of health. By the way, I have successfully applied for attendance allowance and a blue badge and had a new VAT free bathroom without the need for a DS1500.

[denise]

It's not difficult to get the form and apply. Also need to look at not paying car tax. Not sure if that's if it's a WAV vehicle or any vehicle. It's very easy to go round and round in circles looking on gov websites. 😩

[MartinB]

MartinB I think this is typical of the box ticking mentality of some of the people supposed to be caring for us. I was diagnosed at the same time as your wife, having started with hand problems eighteen months earlier. At six months on the dot after my diagnosis I was persuaded to have a RIG which I don’t need and has given me nothing but trouble ever since. At nine months the respiratory nurse suddenly raised the issue of NIV and gave me an oxymeter to wear in bed. I asked for my test results so that I could be fully informed before she pays me a visit next month but all I have received is a letter saying vaguely ‘some dips in oxygen levels’. And to cap it all, my next (online) appointment, at the one year point, is with the end of life consultant. They haven’t actually told me that or prepared me in any way for what he is going to discuss - I only have a name. I looked him up on the hospital website and was shocked that they were going to spring this on us out of the blue. I haven’t dared tell my husband as I feel it will distress him. I feel I am being timetabled towards my doom with no regard for my actual state of health. By the way, I have successfully applied for attendance allowance and a blue badge and had a new VAT free bathroom without the need for a DS1500.

Thanks for this, but saddened to learn that your experience has been so similar. Later in your reply you mention the dreaded appointment with the ‘end of life consultant’. I think we are ahead of you there and hope to offer some reassurance at what may occur. In our case it revolved around getting a referral to Marie Curie and to complete a TEP form. The lady from Marie Currie was lovely and helpful, we were asked to complete a form about Carolines wishes, nothing too personal but more a reminder of forward planning. We requested the TEP form to be sent to us to enable us to discuss and complete in our time and in our way. Initially the consultant didn't want to citing ‘distressing terminology’. But as Caroline has 30 years experience as a carer, our youngest daughter being a sister in our local hospital and her husband a paramedic that augment was lost. All completed and behind us now. Take care x

[Lynne K]

The UK Government bowed to pressure and have scrapped the 6 months rule for a DS1500 recently. But today I read that they’ve added a 12 month rule. So not what we wanted when we fought to scrap the 6 months rule (emailing our MPs and signing petitions) but it’s a step in the right direction. Lynne x

[Ellie]

MartinB That was such an insensitive way to bring up the subject of a DS1500, I'm sorry, ultimately it is a really useful thing for Caroline to have and, as Lynne said, after a hard fought campaign, that 6 month criteria was scrapped. xx

[Mary C]

Replying to SallyAnneB,
sorry your experience sounds negative so far with health professionals.When I got the DS1500 I didn’t have to fill the benefits form in ..did it on helpline and told them I had the DS1500 and was told it was automatic I would get high rate Personal independence payment.Awarded within a week.

I am sure you will take control with respiratory nurse appointment by asking for results and explanation about the rationale for a NIV being suggested and what is likely outcome if you decline the NIV yet,
For example I was told that concerns about carbon dioxide retention.Also what would benefits be etc.

I have a RIG fitted recently with the explanation why I needed it before breathing deteriorates.Also once RIG fitted it would be there for when food supplements are needed and later on for medication to be administered.
On this site some members have mentioned their breathing or physical condition has prevented them having the RIG or PEG fitting.
I agree you need to be fully involved in your future care planning and for me that left me reassured that the palliative care team understood my wishes and reassured me of the support they could offer me.This removed most of the anxiety.For example last week the palliative care nurse spent a long visit to me and She suggested anticipatory drugs to be in my house for when needed.At first I nearly had a hissy fit in my head as thought I must be near my end of life this week.She explained it’s a two way thing that nurses wouldn’t be ringing around to get the medication prescribed and dispensed.As it happens several items weren’t available from local pharmacy so had to be sourced elsewhere.I now feel content that the team have access to aa range of medication to keep me comfortable.
For me and for some other members the anxiety arose until I gained a relationship with the palliative team who respond to date by explaining why certain procedures are suggested and enter into discussion with me about my views.
I do feel confident that I can make my own decisions once I have full information.

Initially when I learnt about RIGS/PEG feeding and before I had discussed it with anyone I thought I wouldn’t agree to that procedure.Once I discussed the reason people have it done I changed my mind as could see what the benefit could mean to me.
In can be a shock when diagnosed to be referred to a hospice team..it was for me until I understood their role potentially in supporting myself and my husband.

Hope your future appointments bring you clarity and time to ask the questions.
Best wishes
Mary

[Deb]

Hi Martin, I'm so sorry that you didn't have the DS1500 explained to you and you had to Google it ! How insensitive and unnecessarily upsetting for you both.

I was issued with one when I was diagnosed in February 2018 . It was patiently explained to me by the MND nurse as a means to access the benefits I was entitled to without endless form filling. I had a second one issued three years later.

Take Care,
Love Debbie x

[SallyAnnB]

MartinB What is a TEP form please?

[Ellie]

TEP = Treatment Escalation Plan, which includes a resuscitation decision record.

[MartinB]

I've just got Stephens will be leaving it for Thursday when the mnd nurse calls. We only fill in a few pages. So if you want to wait I will let you know.

Caroline’s arrived today, all I needed to do was add her NI number