Multi-agency Initiatives in Health and Social Care

Countess of Mar Excerpts

Monday 8th December 2014 Grand Committee

Asked by

[The Countess of Mar]

To ask Her Majesty’s Government what is their assessment of the effectiveness of multi-agency initiatives in the field of health and social care which operate without a separate governance framework.

[The Countess of Mar (CB)]

My Lords, I declare my interests as recorded in the register.

Multi-agency working is not new and some agencies have worked together well over the years, but in the field of health and social care there are some serious problems. Apart from the universal ones of lack of funding and high staff turnover, most importantly, there is no governance framework. This concept is familiar to the Department of Health and to social services for research projects but for some reason there is no framework for multi-agency working. This means that, after major changes in working practices over the past five to 10 years, there is a severe lack of leadership, accountability and conformity in the provision of health and social care for some of the most vulnerable members of our community.

In its introduction to multi-agency working, the Social Care Institute for Excellence states:

“Working in collaboration is essential if individuals are to be offered the range of support they require in a timely manner. Multi-agency working is about providing a seamless response to individuals with multiple and complex needs”.

I will show that this is not so. Professor Steve Field, Chief Inspector of Primary Medical Services and Integrated Care, said in the introduction to the Care Quality Commission’s June 2014 report on the transition of young people from childhood to adulthood, From the Pond into the Sea:

“This report describes a health and social care system that is not working, that is letting down many desperately ill youngsters at critical times in their lives. We have put the interests of a system that is no longer fit for purpose above the interests of the people it is supposed to serve”.

In my contacts with people suffering from myalgic encephalomyelitis—also known as chronic fatigue syndrome or CFS/ME—particularly those who are very severely affected, I encounter some of the worst practice, although I recognise that there are other rare and misunderstood diseases that cause similar problems for the authorities. Part of the problem is the perception held by many in the medical profession that ME is a psychosocial behavioural problem and that the people concerned do not deserve the benevolence of health and social care providers. This is despite an increasingly large body of evidence that demonstrates that this is a very real illness, albeit with psychological symptoms common to many chronic illnesses.

One case that I have been dealing with since the summer is of a young lady who is in the transition process. Prior to reaching the age of 18, she had the very unpleasant experience of being locked away in a unit for anorexics for 16 months when she did not have an eating problem. Her parents, threatened with child protection proceedings, agreed simply because they were terrified of losing their daughter altogether. Little did they realise how ill their child would be when, after the intervention of a very good social worker and myself, she was allowed home. She is now bedridden and has to be tube fed. Health and social care was provided within the purview of social services, which took the lead. The current problems started with negotiations between the CCG and social services for her transition from children’s to adult services in March 2013. She turned 18 in November 2013. Because of the mismanagement of her case by the neighbouring CCG, which had been appointed to conduct her assessment for adult health provision, and the inability of social services to call anyone to account, no decision has yet been made.

It seems that those concerned have not read the National Framework for Continuing Healthcare and NHS-funded Nursing Care, which requires assessments to be completed within 28 days. Her parents have had dealings with at least nine different agencies, excluding her GP, nutritionist and hospital. The health authorities are disputing her need for funded nursing care. Instead of resolving differences together, social services believe that healthcare is necessary and must now appeal to a committee. This is only a very small part of a very complex story. The acute stress that this is causing to the family is not conducive to the patient’s recovery.

In another case, a 16 year-old is also bedridden and being tube fed after being forced to perform graded exercises in a hospital because a paediatrician diagnosed idiopathic chronic pain, and later produced a string of alternative psychological diagnoses. Her parents had, again, co-operated with the authorities in the face of Section 47 proceedings under the Children Act, but they also asked for a second opinion as they were convinced that their daughter had ME. This was refused by the paediatrician. Subsequently the parents obtained two opinions from recognised CFS/ME specialists, both of whom found their daughter to have the illness in its severest form. In fact, she has been found to be only 3% functional. The community paediatrician refused to engage with them and called a strategy meeting without the parents knowing. Senior hospital paediatricians then became involved in the case. The parents have also had to cope with five different social workers in 10 months. To cut another long story short, the hospital finally agreed to withdraw, provided that certain physical tests were conducted on the child. These were done by one of the CFS/ME specialists, himself a paediatrician, who had given a second opinion, and the child’s GP. Her social worker was also present and agreed that the child was well cared for and that there were no child protection issues. The specialist and the GP agreed that they could manage the case until a suitable and acceptable adult hospital physician could be found.

What concerns me about this case is that the hospital medical professionals involved have been determined to hound the parents of this very sick young girl in their determination to prove a point—that the child has a psychological condition. They have distorted evidence at joint strategy meetings, to which the parents were not invited and could not defend themselves. In fact, I have been described as writing intimidating letters to them when I have been trying to help. They are still pulling strings in the background, despite their agreement to withdraw, by demanding to be present at meetings when the parents and the patient have made it perfectly clear that their trust in the doctors has irretrievably broken down and that the doctors are not welcome. They seem determined to pursue a vendetta against this family because they have had the audacity to disagree with the doctors’ diagnosis of the child’s condition. Yet they are answerable to no one unless patients complain to the GMC—a very protracted process.

These problems do not affect only children. A young woman who has had ME with other complications for five years became severely affected and required health and social care. She was then given a psychological diagnosis by a psychiatrist and, on the basis of this, her GP ordered social services to gradually withdraw her care provision over a period of six weeks so that she would be forced to care for herself. Her food was left out of her reach, yet she could not hold a bowl. She has not had her hair washed for eight months. When care was finally withdrawn, kind friends and neighbours went in to cook for her and to feed her. Fortunately, they have managed to help her change her GP and some of her social care requirements are now being met—but no one is answerable for her previous treatment.

I have spoken of instances with which I am familiar. A charity, the Young ME Sufferers Trust, has dealt with more than 140 cases of children with ME where child protection proceedings were instigated at the behest of doctors or teachers because the children were not recovering or attending school. None of these cases was found to be proven, but no one could be held accountable for the untold pain and anxiety suffered by the families. Many are still very frightened that their case might be reopened and are afraid to speak out publicly. This is a terrible situation and it is kept under covers because the parents are so afraid.

I am sure that those who designed the health and social care legislation did not mean it to be like this, and I ask the noble Baroness the Minister to do all in her power to improve the situation. There really is a crying need for leadership, accountability, integrity and competence in this field.