CP Parents support group bemoans health care services in Ghana

A Cerebral Palsy (CP) parent support group in Ghana has expressed worrying concerns about the health care delivery system in Ghana.

The parents sharing experiences at a maiden meeting said they had been very frustrated with the health care system in Ghana and urged to government to do something about it urgently

Mrs Eugenia Tevie, a mother of a child with cerebral palsy who recounted her frustrations to the group said, the hospital environment was not even encouraging to take the children for treatment hence many parents resort to spiritual or herbal solution.

She said: “At most physiotherapy centres it is one a size fit all equipment, whether your child is tall or short, plump or skinny they tie her in the same standing frame for all children accessing the services.”

Mrs Tevie expressed the need for improvement in the provision of health care services for CP children and called on authorities to train mothers with CP children in basic physiotherapy and speech therapy skills since they spend most of their time with the children

Mrs Hannah Awadzi, Initiator of the Special Mothers Project, a project advocating for children with CP and also a mother of a child with CP, reiterated the need for parents to be trained in the basic skills.

“There are very few professionals in that area in Ghana providing services for a large number of patients, I think involving mothers in basic physiotherapy and speech therapy training will go a long way to support these children,” she said

Mrs Awadzi who also bemoaned the health care delivery system said sometimes parents of a child with CP are really made to feel like victims.

“Woe betide you if your child gets sick in the wee hours of the day, some nurses and doctors really make you feel you are a bother,” she said calling on the Ministry of health to do something urgently about the health care system.

Nana Akua Owusu, a Speech Therapist who joined the meeting, admitted that there were lapses in the health care system and urged parents to be united and articulate their concerns to government.

She expressed the wish for a one-stop service centre in Ghana where parents will get all the help they need.

To the one parenting a child with Cerebral Palsy in Ghana

I have come across many mothers parenting children with Cerebral Palsy since I started “the Special Mothers Project” in Ghana.

One things I realize is that every mother or parent is doing their best for the children in their own corner. I have also come to realize the initial joy when two or more parents with such children discover themselves.

They have common things to talk about or share, sharing experiences such as how they have been able to  toilet train their children or what challenges they face with regards to education and health usually takes the centre stage

The Special Mothers project which started as a parents support group for mothers with children who have cerebral palsy is now involved in a lot of advocacy and education, realizing that there is no common platform that voices the concerns of parents with CP children

There is no written or even spoken policy that support the children.  While some schools (I mean the crèche) will readily accept a child with CP others may think twice and yet others will charge extra should they accept a child with CP

There are some parents who because just avoid any  of such conditions and keep their children home and isolated from public life, yet there are others who will go all out and do whatever they can to help their CP children attain the highest and best life that they can

Unfortunately there are also people who exploit parents with such children. I was personally moved when I spoke to a mother who said she moved from “pastor to pastor” seeking help (healing) for her child

She said at some point a “pastor told me to pay GHc1000 for him to pray for my child to walk, when I said I didn’t have that kind of money, he sacked me from his premises and told me to come when I get the money”

The mother said: “I really wept and felt it was the end since I did not have that kind of money to pay a “pastor” but at the appropriate time God lifted my child up and she walked.”

This Mum also shared this as a testimony in church. One thing I realize is that there are people who take advantage of parents with a CP child and victimize them (treat them us victims) in fact there are also people who have children with CP and uses that as an opportunity to extort money

Once on a TV breakfast show, a man and a lady who have children with CP came up and talked about CP, finally the man was asked what could be done for them and he said, “People should help us.”

He said “No amount is too small, help us with diapers, and whatever you can give, leaving an account number,” I felt really disappointed. So I searched for the man’s number and called him.

I engaged him a bit and said: “man don’t you think that you could have asked for good and favourable policies, encouraging environment and the like, instead of virtually begging for peanuts.

Yes, having a child with cerebral Palsy is difficult but using that as a trump card to pity party is worse.

Cerebral Palsy is a neurological condition (brain injury) that affects movement of children

I wish that all parents with CP will come together with one voice to ask for better and efficient health services, education and a great environment that foster good development.

I wish that all parents with CP will come together to work so that CP children in the next generation will have a much easier life

There is hope for children with Cerebral Palsy and the parents of a child with CP has a very important role to play.

  

NGO calls for national dialogue on cerebral palsy

Special Mothers Project, a non-governmental organization that advocates and helps in creating awareness about cerebral palsy has called on government to facilitate a national dialogue on the disease.

“Having a national dialogue about cerebral palsy will go a long way to help Ghana have a favourable policy especially for children with the condition,” it said.

Mrs Hannah Awadzi, Initiator of the Special Mothers Project, said this when she met with Dr Victor Asare Bampoe, Deputy Minister of Health, to discuss issues on the condition.

She said there is an urgent need for a favourable policy on cerebral palsy and more awareness needed to be created issues affecting such persons.

“The month of March has been designated as the Cerebral Palsy awareness month by civil society groups around the world, [but] in Ghana, very little awareness have been created on the disease.”

Mrs Awadzi expressed appreciation to the deputy Minister for granting her audience, and called on the media to show more interest in cerebral palsy issues.

Dr Bampoe pledged the Ministry’s continuous support for the project, saying the Ministry of Health’s doors are opened for further discussions.