We are interested in learning about the experiences of women with disabilities during pregnancy and childbirth, particularly regarding access and suitability of services.

-- Anonymous, September 13, 2002

Answers

I had differing experiences with my two children.

My son was born in Central Middlesex hospital where I met with quite a few problems. I found that the rooms where ladies went to have blood tests were too small to get me in in my wheelchair. This meant I either transferred to their (high) chairs or I sat in the doorway to have blood taken with people stepping over me like I was some sort of undesirable matter on the floor. This sometimes meant getting elbows and shoulder bags in the ear. Doors are always a problem in older buildings, they were generally heavy to open and sometimes the fact that they were too narrow meant trying to open two doors at the same time. Attitudes of staff were a problem for me too. I had to insist that because of the problems with my spine I should have a C- section, not by choice but on recommendation of orthopaedic consultants I had seen in the past. In fact, one consultant told me I should never have children because I would do myself 'untold damage'. My GP was incensed by the attutude of the consultant at CMH maternity and refused to give her any copies of my medical notes, instead he sent a letter saying she had to listen to what I had to say - he couldn't afford to pay someone to stand at a photocopier for two hours just to keep her happy! The consultant admitted that she was not used to dealing with mothers with disabilities, but I don't think she learned anything from dealing with me. I was refused the use of a private room, even though I offered to pay, and my protests about not having enough room for my wheelchair fell on deaf ears. I had to use the toilet and bathroom with the door open and hope that no-one would push past my wheelchair-barricade. The shower was out of use as there was no water supply to it for some reason and, in any case, was also inaccessible. I knew that my next child could not be born in such a place, so I decided that I would go to Northwick Park Hospital instead, in spite of it's reputation - I thought it can't be worse.

When I found myself pregnant for the second time I wrote to the Chief Executive of the North West London Hospitals Trust explaining politely that I hope things would be better this time. He sent my letter down the line until it ended up with the Director of Midwifery. He came to see me at home and we discussed accessibility issues and protocols for dealing with me before, during and after my birth. I made things a little easier for myself by having private antenatal care, which meant I had more time to discuss issues that concerned both me and my consultant. I visited the hospital and chose a private room with en-suite facilities which was allocated to me for my delivery date, with no charge. This meant that I could at least make the toilet and bathroom without needing my chair and they allowed me to use my own bath bubble so I could bathe independently. I do know that the toilets and bathrooms on the ward were not accessible. Because of the age of the building many of the access issues were the same; difficult to open doors, lift buttons too high, lack of disabled parking bays (though two new ones appeared at NPH a day after my raising this as an issue), scanning and consulting rooms too small, etc. Generally speaking, though, second time round was much improved and the attitudes of all the staff (with the exception of one, who wanted me thrown out to make way for a much more important 'paying' customer) was great.

NWLH is undergoing it's Maternity Services transformation at the moment and because of my position as disabled mother I have been invited to join in with the MSLC and with the Maternity Implementation Group, which is looking into not only their new buildings but also at changing their existing protocols to make it a modern service for all. I was asked to speak at a public MIG meeting which involved both users and providers of the service.indeed, the service providers were all genuinely shocked to hear my experiences and obviously didn't realise it was so bad for 'people like me'!

Because of my new role as MSLC and MIG member I have sought help and information from DPN, DPPi and from other disabled parents via the DPN discussion forum as I can only (currently) see things from the perspective of a mobility impaired service user. I shall be looking for responses to your posting with great interest!

-- Anonymous, September 14, 2002

Hello

I am a student midwife and a i am currently undertaking a study about services available to women with disabilities during and after pregnancy. I can understand and appreciate the difficulties faced in the hopsital setting, however i'm unsure about the services that women would find benefical outside the hopsital. I would find it very helpful if you could help me with such information?

Many thanks Hannah Rogers Flat 10 Robbins Hall Gardiner Close Enfield EN3 4LP

HR124@mdx.ac.uk

-- Anonymous, July 08, 2003