I am a lay member for the maternity services liasion committee which helps to get improvements to maternity units. I am especially intrested to hear your views as a disabled person on what you would like to see improved. Any comments of experiences would also be extremely useful

-- Anonymous, October 12, 2001

Answers

I am a disabled member of my local Maternity Services Liaison Committe (West Berkshire) and one of the things which I have managed to do is to secure funding for the purchase of a fully height adjustable crib for our maternity unit. When I had my baby in 1996, I was unable (because of my disability) to lift my baby in and out of a standard hospital crib. I also think that it is really important for a disabled parent-to-be coming into the hospital to have a baby to work alongside maternity unit staff to pinpoint anything which can be done to make their hospital stay more comfortable ensure that they are able to remain as independent as possible during their stay in hospital.

-- Anonymous, October 14, 2001

I do not know if this will be of any use to you, but when I had my daughter just over two years ago the maternity unit in my local hospital was not geared up to disabled pregant women at all.

Being admitted for the last few weeks of my pregnancy as I could not mobalise at all and my husband working full time with another small child at home, I had no option.

I was treated by some of the staff as an inconvienience as I needed assistance with personal care, and was regualary left of the toilet for considerable amouts of time as there was no one to get me off and back to bed. I felt isolated and alone.

I had my membranes swept and went into labour early afternoon. I was left alone most of the day and when I buzzed for help, I was dissmissed with "you could not be in labour its too soon" I evetually got some one to examin me, only to find I was going to give birth imminatly and was rushed to the delivery room and my husband called.

The birth was traumatic as I had no pain relif until it was too late, and being imobile found it very very difficult to say the least.

I left hospital as I arrived in a wheel chair, except thankfully with a healthy baby.

I felt that at no time was there any provision or consideration to a disabled mothers needs, and was made to feel by some memebrs of staff as second rate and substandard.

I think that some people belive disabled people should not have the right to become parents, in the materninity unit I was in, I felt that I was an oddity.

I can only thank my lucky stars that my husband and mother were there to support me at the time.

For a disabled mother it is twice as hard, and I think the whole system needs to be shaken up and made to listen that we do have rights and we are just as worthy as abled bodied people to have a family.

If I were a disabled mother having a child now I would make sure that the unit I knew I was going to understood my needs and was suitably equiped for them. I think that this is one area of the health profesion that needs really looking at.

N. Williams

-- Anonymous, November 01, 2001

Like Nerissa and Simone, I too had problems with Maternity Services. My son was born in 1998 and I was a pain and an inconvenience for the hospital. When I found I was expecting my second child (born in July 2001) I made an "advance attack" by contacting the hospital trust's Chief Executive. Things were really different second time around, I suspect fear of litigation and its associated publicity had a little to do with it, but I think there was also some genuine concern that there was nothing in place to cater for special needs, and the hospital really did want to learn from little me! Tomorrow, I shall be speaking at a Maternity Services conference about my experiences to illustrate that the service has. listened and acted positively. I have also been asked to offer some advice on alterations to the existing building and with planning a new birthing unit at the hospital. When this happens I shall be looking again at this discussion group to see what everyone else has to say - I want to help make things much fairer because I am so sick of people (and institutions) thinking that if you're disabled, you must be old too!

-- Anonymous, November 20, 2001

From previous posts here it sounds like I was pretty lucky when I had my son in June this year.

The staff at my local hospital were very helpful and accomodating. I met with the senior midwife for a tour of the maternity ward a few weeks before my baby was due and we discussed what problems I may have and how they could help. I think this helped a lot because we both knew what to expect of each other.

The ward already had a side room where the bathroom had been adapted for a previous mother with disabilities. The cots were a problem, it was hard for me to reach in and pick up my son as you couldn't adjust the height, but I was told I could have a soft cot side on my bed if I wanted to co-sleep so I could nurse my son in the night. I could only watch as I was shown how to bath my baby as there was no provision for a wheelchair user to access the baby bath.

I met with very little discrimination from the doctors, midwives and nurses and my experience on the whole was good.

-- Anonymous, November 21, 2001

You may be interested in the Disability, Pregnancy & Parenthood international journal which we publish quarterly. It has articles on good practise in maternity care for women with various impairments/disabilities written both by health professionals and women themselves. Our contact details are given in the help-lines section of this website or at info@dppi.org.uk.

-- Anonymous, November 28, 2001

Personally i would like to see all medical profesionals trained in none visual disabilities. eg.. ms, me, specific learning diffs, fibromalgia,...........

I dont always use a walking stick or my wheelchair. so when i attend clinic and ask for a seat with a long back, it isnt because i am being difficult, it is because i need a long backed chair.

I find life for hospital staff is far more complicated if i take my wheelchair / stick with me, so i dont.. However that dosnt mean i am not disabled / sick on days i dont use it.. It just means its a good day!

Vicki xx

-- Anonymous, April 06, 2004

A friend of mine was in hospital last year in Glasgow's Royal Infirmary for her first child. Linda gave birth to a 7 and a half pound baby girl by ceaserian section. The midwife however had to be pulled up by the doctor. She said to Linda I don't know why Blind people have babies they can't see them anyway. Linda got a full apology from the hospital after her husband who is a lawyer decided to take the matter further. The midwife eventually left the hospital but the doctor said that she was not in a minority with regards her opinion. We still have a long way to go to educate people who wear blinkers. Someday we will see everyone being treated equally in all walks of life. I have been labelled with three disabilities Deaf, Epilepsy and a mental health problem. The stigma sticks with you even though you are just the same as the next person. I joined a group called Partners in Policymaking to help change all that and give everyone the life that God meant them to have.

-- Anonymous, April 12, 2004