Trying to help my Dad

Coxy_1774

Hello, my name is Charlotte and I joined because my dad who is 80 this month has incredibly bad RA. He has had it for 30-40 years, and has had several drugs for it in that time. In February this year he developed uveitis and after a trip to Moorfields Eye Hospital, he was told to come off the drug he was on as it was making it worse. They prescribed him with adalimumab and steroids. However the prescription for the adalimumab had to be authorised by his local rheumatology department, which (to cut a really long story short) finally arrives tomorrow. After 6 months. In that time he has not had any treatment, he has had several falls, and one of them put him in hospital for 7 weeks. In that time he still received no drugs aside from paracetamol, and he received no physio. He was discharged with no care plan in place and is now bedbound at home with private carers visiting twice a day. He is not eating and he sleeps a lot. We are all so worried as you can imagine. He has not been prescribed Methotrexate with his adalimumab, but his script is for 40mg every fortnight. My understanding is he should have methotrexate alongside a fortnightly injection of 40mg of Yuflyma. Yet again we have had to contact his rheumatology department to ask for something else. They are, to be blunt, worse than useless. I suppose I am after some positivity as everything seems very bleak right now. I am hoping the adalimumab works wonders fast and that he can begin some basic physio in the near future. My main worry is he is not eating and he is completely immobile - he cannot even feed himself. An advice or tips would be gratefully received by dad and our family. Thank you.

Cath100

Hi Charlotte, thanks for your message

We are really sorry to hear about the experience that your Dad has been having and the lack of support too. This sounds so tough for both him and yourself to go through to say the least. We are really so sorry to hear also about how his eating and mobility has also been impacted. It sounds as if you need to obtain a referral to an Occupational Therapist, you can either do this via the GP or contact the local city council and you can find out more here about how they can help:

Occupational therapist (OT) | Practical support | Versus Arthritis

You could also try getting some support from the hospital Patient Advice and liaison Service (PALs) and they can chat to you about the difficulties that you are having with getting the right support from the healthcare professionals and help to support you in moving forward and improving your experience. They can be contacted via your local hospital.

If you would like further information or advice or just a listening ear, please do contact us too on the helpline on 0800 5200 520 and we can chat to you further about the situation and give you more info and practical support here

Get help | Helpline, online community, arthritis virtual assistant

Thanks,

CATH100

Helpline Advisor

Coxy_1774

Thank you Cath. I have passed this info on to my mum re: OH. We have already contacted PALS. I just feel very let down by the people who are here to help. Your reply is really appreciated. Thank you.

helpline_team

Thank you for your message, @Coxy _1774 and thank you to @Cath100 I agree with your helpful response. We're very sorry to hear about your dad’s situation — it must be incredibly upsetting for both him and the family. It’s good to hear you’ve contacted PALS. It may also be worth speaking with the Patient Association for further advice and informing Healthwatch about your concerns. The occupational therapist might be able to refer him to a dietitian, who can help ensure he’s receiving adequate nutrition — rebuilding strength can take time, but this support can make a real difference. We truly hope your dad starts to feel better once he begins Adalimumab. These biologics help reduce inflammation; some people notice improvements within 2 weeks, although it can take up to 12. Anti-TNF drugs like Adalimumab block a protein called TNF, which plays a key role in causing inflammation, pain, and joint damage.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/adalimumab/

When your dad feels ready, seeking advice from a physiotherapist on how to safely build strength back up may also be beneficial.

Best Wishes to you and your dad

Sarah
Helpline Advisor