"Feeling extremely let down by Rheumatology services"

My husband suffers from Ankylosing spondylitis. 

In 2019 my husband had to change to a new medication after one that had worked for 2.5 years began to stop being so effective with pain management . After 4 long difficult months of severe pain between medication, we attended his appointment and he was changed to a new drug. During the appointment they explained the side effects. They highlighted to us how any sever skin reactions needed reported and that it carried a high chance of skin cancer.

Just 6 weeks into taking the drug he had started to develop small patches of itchy skin. Then he developed a large growth suddenly on his neck. After Christmas 2019 a referral from the GP was made and he was seen in February and had it removed by a private clinic as an NHS referral . After Christmas my husband began to develop an infernal itch in his skin. This began on his arms and legs then quickly spread to every inch of his body, so badly he began to tear lumps out of his skin. He was told to ask the GP but was already on the maximum dose the GP could  prescribe without a consultant letter. 

We had called the rheumatology team but they were unable to see him face to face and an appointment was made for a review in March. This didn’t happen due to covid. Having to call an answer machine and wait for a call back 2/3/4 days later. As lockdown ensued and my husband's health became worse and worse and no matter the calls to the team no one gave any suggestions of what to do, despite my constant enquiries about the medication causing a reaction. We were told that the medication couldn’t cause him to be itchy or have bad skin down the phone yet reading the leaflet of the drug said differently.

He eventually had a phone consult with the doctor in April 2020, where the consultant said to stop the medication. At the time we asked how will he manage the pain and he said ask your GP. When we asked the GP for medication he could only prescribe low grade pain killers as a consultant hadn’t given him a script for anything else. My husband was then seen at the end of August. I requested to go to the appointment as he can no longer manage long appointments without an advocate and support. I was told no due to Covid so I asked him to video call me when the dr arrived so that I could ensure that his point got across that he had been left without proper pain management and that he wanted to be referred to the pain team. The doctor said no he couldn’t call me at the time as he didn’t want to have a conversation like that.

The doctor spoke with my husband that day about getting a new biological drug started. In August my husband was not in great shape mentally but was able to physically do work from home during the day. Since April his health has continued to go down hill and no one appears to care . He has lost 3 stone in Weight,  has had to go on every supplement for blood work as he has become anaemic, with horrific low levels that are still not corrected 4 months later. He has now got muscle wastage on his arms and legs and deep depression because his pain is so unmanageable.

The doctors do not seem to see that he needs immediate help as they keep pushing his appointments further and further back, although one has rung to ensure that he is coping until his appointment I was devastated when we realised they didn’t even take the time to prescribe him something in addition to help the pain management. The Rheum team provided a script for exactly the same tablets my husband was already taking. When my husband pointed this out they said they would sort it and handed him back the same script in an envelope to give to the GP.  This was then recognised to be no different and didn’t have any additional tablets.  

He has now been waiting for an appointment with the rheumatologist nursing team since August 2020. Originally the date was October this became November then had been moved to January 2021.  However after receiving a call it’s been now moved until the end of  April 2021. I do not see this an an adequate timeframe for someone to wait to begin medication. We would happily have the conversation over zoom to speed the process up or speak to a doctor, or a different nurse or attend a weekend clinic, or attend any day anywhere in Northern Ireland if it would speed up the process.

My husband now spends on average 16-18 hours each day in bed due to the pain he is in and he can’t move as the pain medication isn’t strong enough. I have to work full time and I have 2 young children and I have to now run around trying to contact doctors and nurses during allocated times ( as a teacher this is a challenge) and then I have to wait for them to call me me back as my husband isn’t able to do this. We have reached the point of total despair. He needs treatment now and needed to be put on treatment in August 2020 not 12 months after stopping the last medication. Overall I am feeling extremely let down by the NHS care.