Written evidence submitted by a member of the public (CVD0007)

 

I am a 68 year old woman who lives with her husband and cat.  I have suffered from auto-immune illnesses most of my adult life and in consequence am now quite severely disabled and restricted in what I can do.  I have seronegative rheumatoid arthritis and uveitis of the right eye and I have had Crohn’s disease for many years resulting in an ileostomy in 2008 but still suffer from chronic digestive problems which means I have to be very careful about what I eat.  The uveitis means I am almost blind in my right eye and I am waiting for a cataract operation in my left so I am very poorly sighted at the moment. Because of the rheumatoid and poor absorption of minerals etc related to the Crohn’s I now also have bone problems and spinal issues resulting in chronic pain.  I don’t take any of the recognised rheumatoid drugs except Meloxicam because none of them work.  Enbrel worked for me for years but then my body became immune to it and nothing has proved effective since. So instead I take 7mg of Prednisolone each day.


We locked down some days before it was official and my husband decided he would lock down too so there was no way he could expose me to the virus.  We were well aware that I would be very vulnerable if I did contract the virus and took every care.  However, although I registered on the YouGov site it was some time before we received any support.  We struggled to get fresh food like milk cheese fruit and vegetables and were lucky that we keep our cupboards reasonably full though we had never bulk bought.

 

I really worried for some weeks as to how we were going to eat at least a slightly healthy diet and whether I would be able to get things I could eat as for instance I only eat fish and chicken as can’t digest red meat and I am allergic to eggs.  We also had problems with collecting prescriptions as although I contacted our local pharmacy as quickly as I could they said they had no more capacity for delivery.


Here is a rough timeline:


21 March contacted pharmacy who couldn’t deliver Had offers from paper boy and family, and local community aid of help


27 March registered with YouGov replied 01 April by email


30 March discovered paper shop would deliver milk eggs and bread


07 and 20 April managed to get supermarket deliveries from Waitrose and Tesco only achieved with great difficulty and spending a lot of time waiting online.


08 April offered priority by Sainsbury’s 29 April by Tesco and 15 May by Waitrose.


Late April had foodbox delivered - box was too heavy if I’d been by myself would not have been able to cope with it. Most items unsuitable for my limited diet.  We gave some to family and friends and some to Larder but I expect some people have put in bin which I think is a complete waste of food.  Cancelled it.


07 May emails and letter from NHS finally arrived !!


Without my husband’s help and support I would have found life extremely difficult both physically, mentally and emotionally.  I miss my family and friends visiting.


I am pleased to say our local GP practice has been helpful and supportive in a medical way and we have no complaints about them but we are also concerned that all hospital appointments have stopped meaning even urgent appointments don’t seem to be happening.  This is very worrying for someone with chronic illnesses that can escalate quite quickly. This means there are thousands more people waiting for appointments than usual and it is something of great concern to me but not often mentioned.


We felt everything happened far too late and if we hadn’t been reasonably proactive about trying to get online shopping and help when needed from volunteers life would have been much harder.  Not everyone is online or even has basic mobile phones. My elderly mother-in-law relies on her landline.


Also, we found the daily briefings confusing in that often nothing seemed to be said about the shielded or you didn’t know whether they were including the shielded or not in particular pronouncements.  Nothing has changed - I am still extremely vulnerable - and we have faced up to the fact that if I caught the virus I would almost certainly die.  This does not make the idea of going back into society, visiting hospitals and doctors etc any easier and I would think there will be many others, not just myself, who are very uncertain of breaking lockdown but the support we have had is being taken away from us.

 

 

 

June 2020