In a new series on the NHS, the Guardian will feature experiences of patients, their families and staff of treatment provided across east London and west Essex. As A&Es continue to struggle with demand and politicians argue over the future of healthcare, we will publish first-hand accounts, features and news stories on the latest developments. We want to hear from you if you have something to say about your local hospital, GP surgery, or clinic. Click here for contact details of reporters covering your area. Alternatively, you can submit a story here.

As part of the Guardian's ongoing series on people's experiences of the NHS, Natalie Moss, whose young daughter is one of just 300 children in the world known to suffer from Ullrich Muscular Dystrophy, writes about the treatment of rare conditions.

I rely on the NHS services to help with my daughter Sophie who has Ullrich Muscular Dystrophy.

When Sophie was born at Princess Alexandra Hospital in Harlow, they noticed straight away she was 'floppy' and that her hips clicked.

It wasn't until she was 10 months old that she had her first surgery and it was a surgeon at the Royal London Hospital that took a muscle biopsy that was then sent to Great Ormond Street for testing.

We were told that there was a strong possibility that we will never get a diagnosis as everything they had tested for was negative.

Finally at 13 months we were called in for a meeting with a neuromuscular consultant and were told she had Ullrich Muscular Dystrophy - no one, not even hospitals, were expecting that result.

It’s a rare condition and we were lucky she got a diagnosis.

Now, Sophie is three and we regularly attend Princess Alexandra Hospital in Harlow.

We wait an average of two to three hours to be seen which is appalling as Sophie has an emergency care plan granted by Great Ormond street and should be given immediate access to a paediatrician.

For us they are not prepared for Sophie and eight out of 10 times they will need to liaise with Great Ormond Street.

It's horrible waiting with Sophie as she is so vulnerable, she will catch anything and needs help because she is not able to fight it off as quickly as anyone else.

They were however very good with us the last time we were there just before Christmas but I think that was because Great Ormond Street had demanded they do specific tests and follow the emergency care plan.

The NHS has over the last few years provided Sophie with specialist equipment that has been very easy to ask for and usually quick at receiving.

With regards to our GP surgery, they are amazing! Whenever we need an appointment we have it.

Overall I am satisfied with NHS service but there is such a lack of knowledge and in my opinion patients are treated from a textbook rather than on an individual basis.

It would be helpful for people that have a known life limiting condition to have direct access to a paediatrician and a direct point of contact when going to hospital because as I say, I feel receptionists are just following textbook training.