Our right to equal healthcare

July 5, 2018 ENABLE Scotland Blog John Feehan

My name is John Feehan. Back in 2007, I was diagnosed with Hodgkin’s lymphoma. I want to share the bad things and good things about my experience at that time so that this can help other people who have learning disabilities and are diagnosed with cancer.

When I began to feel ill, I visited my GP on several occasions, but no-one picked up on how serious my illness was. Every area of my life became affected by how ill I became, from not being able to keep my house clean, to my social life being ruined as I was too ill for a lot of everyday tasks.

Diagnosis

I finally received a diagnosis of Hodgkin’s lymphoma after being judged too ill to fly at the airport when I was meant to be going to Milan with my friends.

I was very anxious in the hospital – not only from the shock of being told I had cancer, but also about things I hadn’t had a chance to sort out, like my car still being parked in the hospital car park and who was going to look after my pet cat while I was in there.

The right support

Luckily, two volunteers from the Ayr and District ENABLE branch stepped in to help me. They were like my angels! They arranged for my car to be picked up from the car park, and they made sure my cat was looked after while I was I hospital and throughout my treatment and recovery.

They also supported me while I was in hospital, arranged for my house to be cleaned up and redecorated, and fought for me to receive more hours of support.

They also helped me switch to a new support provider, which was important to me since I was very unhappy with my previous support as they had let me down when I was clearly very ill. They hadn’t helped me to express how I was feeling or to explain my symptoms to the GP.

However, the ENABLE volunteers who helped me and the NHS staff who treated, supported and looked after me were absolutely amazing.

Macmillan ENABLE partnership

People who have learning disabilities have a right to equal healthcare, and that means people who work in health and social care need to understand that some patients will need a bit of extra support during medical appointments and treatment.

I was happy to share my story with ENABLE Scotland, who have been working in partnership with Macmillan Cancer Support to improve the cancer care experiences of people who have a learning disability.

As part of that partnership, easy read resources including 7 steps to equal healthcare have been published to help people who have learning disabilities and their families understand the standard of care and support that they should expect when undergoing cancer treatment.

You can download these resources here.

Once I got the treatment and support I needed, I made a full recovery and remain very active with ACE and have a job working in ENABLE Scotland’s Campaigns and Activism team.

I hope sharing my experience and the new resources developed by ENABLE Scotland and Macmillan will ensure everyone can exercise their right to equal healthcare.

John Feehan is a member of National ACE and works in ENABLE Scotland’s Campaigns and Activism team

You can also check out the video our members Keith, John and Russell worked on with the General Medical Council explaining what’s it like to go to the doctors or hospital when you have a learning disability, and why is it important:

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