Welcome to the August update of the Lewisham Mental Health Carers forum. This forum runs from Carers Lewisham over by Forest Hill, just near Forest Hill train station. The forum focuses on unpaid carers who support/care for someone with mental health needs e.g. schizophrenia, eating disorders, bipolar, major depression, addictions and so on. I even try and involve those caring for learning disabilities.
The forum tends to try and form a relationship with the local mental health trust, that being South London & Maudsley, we also seek for ways to educate, discuss and empower families and carers. We also seek engagement from Lewisham Hospital, Lewisham CCG, Lewisham council, Lewisham Healthwatch and other important stakeholders.
I have always mentioned to members or perhaps anyone that knowledge and information is power. So for August we were very fortunate enough to have South London & Maudsley’s former Patient Information Manager. Roslyn Byfield is a trained Counseller and therapist, she has her own practice and is very active in discussions about BACP, which stands for the British Association for Counselling and Psychotherapy. I have known her for quite a while now and was happy that she took some time out of her schedule to engage with families and carers.
As she placed leaflets and booklets on the tablet for carers to take, it brought back a lot of memories. Infact one of the booklets, which was the physical wellness booklet won an award.
We were hoping to be joined by SLaM quality Improvement, but they are more likely to attend in September. Plus in some ways, perhaps that was a good thing because the forum had a major discussion with Roslyn. Part of the talk was on carer empowerment and several organisations were mentioned. We also talked about the Government’s anticipated release of the Green Paper which focuses on Social care, but there has been major disappointment that political parties are kicking the social care can down the road. There was also talk about the Carers Action Plan, but many are skeptical about it.
In regards to empowerment we were told to form links regarding the NHS Constitution and focus on the Human Rights Act 1998 and the Equality Act 2010 as well as the Care Act 2014. We can make the mistake of trying to hold authorities to account, but its very hard to do that on your own and getting links to the human rights organisations can really speed things up if carers are not given the right information and support.
Here is a link, which might interest unpaid carers on their human rights.
The forum also focused on European Convention on Human Rights and what to learn from them. This could be useful if policies really begin to put pressure on carers and it would be important to make links.
At some point I will map out organisations to pull in to educate families and carers and also form stronger links as high up as possible.
There was some talk about the review of the Mental Health Act, which hopefully can put a spotlight on how families and carers can be pushed aside, especially when a loved one comes to harm, neglect or serious incident. We spoke about the problem with documentation from the health services, but it was mentioned some documents can be complex to stop people delving too far into things. It can be a strategy at some meetings to place jargon to ward off stakeholders querying why NHS systems are not working or why is there a high rate of Serious incidents. A lot of talk was on quality improvement, but without engagement then some members were wondering what to do.
We were focusing a lot on NHS constitution Section 3A and how it can support families and carers. Plus focusing on the National Institute for Health and Care Excellence. It does not help that guidelines are not enforceable and there was queries as to why NHS services are struggling. It does not help that funds are lacking for NHS trusts and then government places targets putting staff under pressure, which in turn affects families and carers.
We did not spend all the time focusing on carer empowerment, but also on therapy and counselling. I myself certainly have had not very good experiences with counselling, especially family therapy. I felt the outcome was a way to cover up the lack of services and then blame the family or carer for the patient relapsing. Some carers are in a worse situation when they are pressured to admit they are the cause of mental distress, leaving them confused, stigmatised, ashamed and isolated.
This is when accreditation came into the discussion. It is well known that there are good and bad counselors, but what happens if accreditation does not pick out the bad ones? Who is to blame? The big push for IAPTs has caused a massive break up of the counselling industry. Some people feel that counselling is not a journey, but now like popping in for advice. Roslyn mentioned counselling should not dis-empower the patient into looking for advice. Counsellers need to have life experience before they can examine someones life, no course be it a BSc or Honours would be enough for such a profession. There was talk about the BACP and PSA (Professional Standards Authority), which carers should keep an eye out for updates.
Lastly there was talk about how carers MUST make time for themselves, it is important to look after our own health and wellbeing with emphasis put on spirituality. Many of the members felt that they were pressured to focus on their cared for, but it was mentioned that such mindset should change. It was however not an order but to be mindful of our own health needs.
Below was a set of tips given by a veteran carer.
• Seek help at an early stage
• Don’t be ashamed of mental illness
• Speak out if you think something is wrong
• Take care of yourself with counselling and exercise
• Keep in touch with your spiritual side
I was glad that Roslyn had time for the forum and will certainly follow up on making those links. The forum was told that they already have the resources to make some serious pathways, but there still needs to be some support for empowerment.
This concludes the August update for the Lewisham MH Carers forum.